Contemporary Challenges in Organ Donation and ...

Copyright © by Difin SA Warsaw 2016 This monograph is a result of the project “Contemporary challenges of organ transplantation and donation in V4 countries, Slovenia and Turkey” (application ID 11520195) and was financed by the International Visegrad Fund.

The monograph also received financing from Kazimierz Wielki University, Bydgoszcz, Poland Reviewers: Professor dr hab. Lidia Cierpiałkowska (Poland) doc. PhDr. Jana Miňhová (Czech Republic) Photo on the cover Professor A. Rüçhan Akar, Ankara University, Ankara, Turkey ISBN 978-83-8085-122-1 This edition published in 2016 by Difin SA 00-768 Warsaw, ul. F. Kostrzewskiego 1, Poland Phone: +48 22 851 45 61, +48 22 851 45 62 www.ksiegarnia.difin.pl Printed in Poland

Table of contents Introduction: Biopsychosocial Approach to Transplantation

9

Pa rt I .

REPORT. Contemporary Challenges in Organ Donation and Transplantation in the V4 Countries,Slovenia and Turkey

19

A u t h o r s : H a n n a L i b e r s k a ( P o la n d ) , K la u d i a B o n i e c k a (P o la n d ), P ř e m y s l F r ý d a ( C z e c h R e p u b l i c ) , M i l o s A d a m e c (C z e c h R e p u b l i c ), D a n i e l W e t t s t e i n (H u n g a ry ) , D a n i e l K u b a (S l o va k i a ), Z i g a S e d e j (S l o v e n i a ) , A . R ü ç h a n A k a r a n d E wa M a k u c h ( T u r k e y )

International Cooperation in Transplant Medicine in Czech Republic

21

P ř e m y s l F r ý d a , JUD r

Where We Come From, Where We Are Going? – Current Challenges and Development of Transplantation in Hungary

32

D a n i e l W e t t s t e i n , MD

Challenges and Limitations of Transplantation in Poland Dr

hab.

Hanna Liberska,

prof.

37

UKW

Transplant Program in Slovak Republic – Small Country Point of View

43

D a n i e l K u b a , MD

National Organ Donation and Transplantation Program in Slovenia

50

Z i g a S e d e j , MD

Organ Transplantation System in Turkey

59

P r o f e s s o r R ü ç h a n A K AR , P h D , MD, E wa MA KU C H, MA

Final Conclusions

64

6

Table of contents

Pa rt I I .

Psychological Determinants of Quality of Life of Recipients Organs and Attitudes towards Transplantation in Society

69

Chapter 1. The Bright and Dark Sides of Transplantology – An Example from the Patients of the Nzoz Diaverum Dialysis Station in Kościerzyna, Poland

70

Aleksandra Szulman-Warda, Mariola Bidzan

Chapter 2. Quality of Life and Acceptance of Illness among Patients with Ventricular Assist Device Implementation and after Heart Transplantation

87

K l a u d i a B o n i e ck a , E wa M a k u c h , E v r e n Ö z ç ı n a r , H a n n a L i b e r s k a , A. Rüçhan Akar

Chapter 3. Attitudes Towards Transplantation – Is It Possible to Change them?

99

Hanna Liberska

Chapter 4. Attitudes toward Organ Transplantation and Locus of Control among Young Adults

109

A l i c j a S z m a u s - J a ck o w s k a

Chapter 5. Life Satisfaction among Young Adults and their Attitude to Medical Transplantation and Organ Donation

120

M a rt y n a J a n i ck a , A g n i e s z k a K r u c z e k

Chapter 6. Belief in Generalized Self-Efficacy and Attitudes toward Transplantation

131

A g n i e s z k a K r u c z e k , M a rt y n a J a n i ck a

Pa rt I I I .

Sociocultural Determinants of the Attitudes towards Transplantation

147

Chapter 7. Beliefs about Transplantation in Polish Families

148

Hanna Liberska, Dariusz Freudenreich

Table of contents

Chapter 8. Transplantation: Communicating with the Family of a Potential Donor: the Perspective of Young Adults (Research)

7

164

B e ata H o ł t y ń , J a n i n a B r u d n y , P i o t r G o ś k a -H o ł t y ń

Chapter 9. How Do Folk Beliefs of Brain Death Influence Attitudes toward Transplantation? A Study of Anthropology in Medicine

176

S e b a s t i a n L at o c h a

Chapter 10. The Role of Publicity, Social and Educational Campaigns in Changing Attitudes toward Organ Donation Consent

184

Ewelina Kamasz

Chapter 11. Mass Media Effect on Individuals’ Knowledge and Behaviors toward Transplantation

193

P i o t r L e wa n d o w s k i , W i t o l d K o ł ł ą ta j , M a g d a S o wa , J u s t y n a S z a k u ł a , M a ł g o r z ata D z i e d z i c

Chapter 12. Persuasiveness of the Message – the Analysis of selected Social Campaigns on Transplantation

205

Joanna Jankowiak

Chapter 13. Social Attitudes to Heart Transplant Based on Łukasz Palkowski’s Film “Gods” [“Bogowie”] (2014) K r i s t i n a H ry n c e w i c z , N ata l i a P i l a r s k a

216

Introduction: Biopsychosocial Approach to Transplantation

The monograph is the outcome of an international project entitled “Contemporary challenges of organ transplantation and donation in V4 countries, Slovenia and Turkey” financed by the International Visegrad Fund (ID 11520195). The partners in the project were Kazimierz Wielki University in Bydgoszcz (Poland), Narodna Tranplantacia Organizacia (Slovakia), Koordinacni Stredisko Transplantaci (the Czech Republic), Semmelweis University, Department of Transplantation and Surgery (Hungary), Ankara University Faculty of Medicine Organ Transplant Centre (Turkey), and the Institute of the Republic of Slovenia for Organ and Tissue Transplantation (Slovenia). The aim of the project was to exchange ideas on a wide variety of problems associated with organ donation and transplantation that exist in medical science, medical practice, psychology and the socio-cultural area, including education and legislation. The project participants were particularly concerned with (a) the education of healthcare professionals and the improvement of transplantation techniques as well as (b) the development of social trust and support for organ donation and transplantation. Much attention was devoted to the social attitudes toward transplantation. From the medical point of view, the process of transplantation involves the following steps: making a correct diagnosis, finding a donor, performing a successful surgery, monitoring the donor’s and recipient’s health after the surgery and conducting any necessary post-transplant medical interventions. From the psychological perspective, the process of transplantation is related to the psychological preparation of the donor and recipient as well as their close ones to the procedure and monitoring of their further psychological condition. A very important problem is the social attitude toward organ donation and transplantation, and the hopes and fears regarding the issue, which, as it is believed, are culture–specific. All these problems were discussed at the meetings of the project partners and other persons interested in the subject and representing the following research centres: Kazimierz Wielki University, Nicolaus Copernicus University in Toruń, University of Social Sciences and Humanities in Warsaw, University of Gdańsk, Medical University of Gdańsk, The John Paul II Catholic University of Lublin (KUL), The Józef Piłsudski University of Physical Education in Warsaw (AWF in Warsaw), University of Zielona Góra, University of Łódź,

10


Nicolaus Copernicus University Ludwig Rydygier Collegium Medicum in Bydgoszcz, Medical University of Lublin, University of West Bohemia (Czech Republic) and other stakeholders. The latter represented various institutions collaborating with research centres, including teachers, doctors, and nurses. A significant contribution was made by the representatives of Poltransplant, namely: the director of this institution, regional coordinators and members of societies for organ donors, recipients, and their families. Many researchers have pointed to the need of a holistic approach to human health. The idea of an integrated treatment of the human body and psyche has been the background of the biopsychosocial model and the search for mechanisms determining the psychical, social and somatic human health. As defined by the World Health Organization (WHO), health a complete state of physical, mental and social wellbeing, and not merely the absence of disease or infirmity. A healthy person is active in many areas of social and economic life. The category of health also has a spiritual aspect and takes into account ideology and religious beliefs. Human health depends on genetic inheritance, family relationships and a wider range of social and environmental factors; it also depends on the natural environment and economic environment (fig. 1). Another equally important factor underlying human condition is the level of sociocultural development, including the education system, and the quality and availability of health care. Individual attitudes toward health and illness are developed under the impact of family and outside it. One other important aspect is the impact of educational character exerted not only by education institutions but also by the media.

Natural environment

Somatic health

Mental health

Social health

Spiritual health

Genes

The quality of health care: availability and organization

Health beliefs in the family

Economic conditions

Social environment

Health beliefs Health beliefs shaped promoted by the health by media education system

Fig. 1. Relationships between health and types of environment, and their determinants. (Author: H. Liberska, 2011)


11

Other factors shaping attitudes toward health are the cultural norms that regulate the human behaviour toward the body and the so-called health–promoting behaviour. Some of them are culture–specific. In many cultures of the Orient, the holistic approach to human health prevails, while western cultures focus their attention on a disease, and the various dimensions that constitute a human being are treated separately. This approach is consistent with the traditional biomedical model and is called the scientific approach (DolińskaZygmunt, 1996). However, a tendency to change the latter has recently been observed (Heszen, Sęk, 2015), perhaps as a result of a greater openness toward medical data that indicate mutual relationships between the psychological and somatic aspects of human health, coupled with the context of human life and development. Transplantation should be considered from the biopsychosocial perspective. For all the people involved in the process, the surgical procedure is of vital importance; and organ donation and reception are a source of both positive and negative emotions. It also has a considerable impact on the psychological well-being of the donor and recipient as well as their close ones. If an organ is transplanted within the same organism, the procedure is called autotransplantation; if it is transplanted between a donor and a recipient the procedure is called alotransplantation or homotransplantations (transplantation within the same species). The medical world has accepted transplantation as an effective and relatively safe treatment method; but what is the opinion of psychologists? This question was also discussed in the meetings. Although the first attempts to perform organ transplantation were made already in 1902, when the first kidney transplantation was performed, many people continue to have numerous doubts about this method of treatment, despite the growing successes of transplant surgeons. This treatment method owes much of that success to the development of immunology, discovery of immunological reactions (1942) and immunosuppressants (1958). A breakthrough in the field was the first human heart transplant performed in 1967 and the use of cyclosporine in 1983, which limited the number of rejections. The medical success of transplantation has not brought about equally significant changes in the social attitudes to this method of treatment. In view of the above, the main problem discussed in the meetings was how researchers in many other disciplines can contribute to the changes in human mentality to save many people’s lives and improve their health. Advances in medical sciences permit successful treatment of many serious diseases, which were a great challenge not so long ago. A chronic disease of an organ and the treatment methods used has a great impact on the psychosocial and physical functioning of a diseased person. Contemporary medicine offers many options for treating some type of organ malfunction, but transplantation is the best method when it comes to acute organ failure (Cierpka, Durlik, 2015). The organ to be transplanted is obtained from a living donor related to the recipient (family transplantation) or from a deceased person. In order to be fully successful, the treatment method requires

12


some effort from the patient, usually significant changes in the patient’s lifestyle. A healthpromoting behaviour is important not only for during the recovery time, it is also important in terms of the quality of life and level of psychosocial functioning of the patient (BorzuckaSitkiewicz, 2006, Woynarowska, 2008). Given the above, it can be concluded that research into the effectiveness of transplantation from the biopsychosocial perspective with the holistic approach to human health seems fully legitimate. This monograph is composed of three parts. The first part presents a report on the contemporary challenges in organ donation and transplantation in the V4 countries, Slovenia and Turkey. The report shows achievements and failures in transplant medicine in the countries of the project partners (grant no. 11520195). The authors of reports in this part are medical doctors, lawyers and psychologists representing such institutions as Narodna Tranplantacia Organizacia (Slovakia), Koordinacni Stredisko Transplantaci (the Czech Republic), Semmelweis University Department of Transplantation and Surgery (Hungary), Ankara University Faculty of Medicine Organ Transplant Centre (Turkey), the Institute of the Republic of Slovenia for Organ and Tissue Transplantation (Slovenia) and Kazimierz Wielki University in Bydgoszcz (Poland). The second part of the monograph is composed of six reports on certain psychological determinants of the attitudes toward transplantation. Professor Mariola Bidzan and Dr. Aleksandra Szulman-Wardal wrote a report entitled “The Bright and Dark Sides of Transplantology – an Example from the Patients of the NZOZ” Diaverum Dialysis Station in Kościerzyna, Poland. The authors presented the results of their long-term studies on the functioning of patients undergoing dialyses and those after kidney transplantation. An interesting result is the effect of organisation of the medical care system on certain psychosocial conditions. The following authors: Klaudia Boniecka, Ewa Makuch, Evren Özçınar MD, Professor Hanna Liberska and Professor A. Rüçhan Akar presented a paper titled “Quality of Life and Acceptance of Illness among Patients with Ventricular Assist Device Implementation and after Heart Transplantation”. It presents results of a comparative study regarding the psychological condition of persons following heart transplantation or left ventricular assist device implementation (LVAD). However, the results are ambiguous and indicate the complexity of conditions determining the well-being of patients treated with the two methods. It is recommended to continue to monitor the functioning of both groups in order to recognise changes in the relationships between somatic and psychological health over time. The next report in this part entitled “Attitudes towards Transplantation – Is It Possible to Change them?” by Professor Hanna Liberska presents the results of an experimental study on the induced changes in the attitudes toward transplantation. To check the effectiveness of the proposed method of persuasion, it is necessary to repeat the study. In the article, “Attitudes toward Organ Transplantation and Locus of Control among Young Adults”, Alicja Szamus-Jackowska, a psychologist, analyses the importance of the


13

psychological construct of locus of control. She presents the studies aimed at checking whether the attitudes toward organ transplantation are caused by external or internal locus of control in a population of young adults. Martyna Janicka and Agnieszka Kruczek wrote a report entitled “Life Satisfaction among Young Adults and their Attitude to Medical Transplantation and Organ Donation”. They were interested in the attitude toward transplantation among medical students (medical rescue and optics with optometry) and psychology students and its relationship with life satisfaction in in the study sample. Although the majority of respondents had a positive attitude toward transplantation; however, it may be surprising that despite the declared public support for this life-saving treatment, the number of donors is still inadequate; however, it cannot be excluded that it is a specific effect of a relatively low level of satisfaction with life. Agnieszka Kruczek and Martyna Janicka also wrote a report entitled “Belief in Generalized Self-Efficacy and Attitudes toward Transplantation”. Their assumption was that stronger self-efficacy results in deeper engagement in health–related behaviours. According to the results of their study, individuals with high level of self-efficacy talked to their families about the possibility of donating their organs for transplantation after their death. The third part of the monograph contains texts on the sociocultural determinants of the attitude toward transplantation and the genesis of social stereotypes concerning heart transplantation. Professor Hanna Liberska and Dariusz Freudenreich presented a report entitled “Beliefs about Transplantation in Polish Families”. According to their results, a positive attitude toward tissue and organ donation prevails in contemporary families. The study results also showed that there is an intergenerational transmission of attitudes toward transplantation. Another research paper entitled “Transplantation: Communicating with the Family of a Potential Donor – the Perspective of Young Adults (Research)” was written by Beata Hołtyń, Janina Brudny and Piotr Gośka-Hołtyń. These authors concluded that the negative stereotypes concerning organ transplantation are to a certain extent a consequence of erroneous communication between the potential donor, their family and the potential recipient and the recipient’s family. Sebastian Latocha presents a paper entitled “How Do the Folk Beliefs of the Brain Death Influence Attitudes toward Transplantation? A Study of Anthropology in Medicine”. The author puts forward a hypothesis that people rarely use the biomedical definition of human death, by which death is understood in terms of brain death. According to the author, the reasons for the confusion regarding deceased donor transplantation stem from the culturally determined patients’ beliefs concerning the symptoms of death. “The Role of Publicity, Social and Educational Campaigns in Changing Attitudes toward Organ Donation Consent” is a research paper provided by Ewelina Kamasz. The author analyses the effectiveness of social campaigns promoting the idea of transplantation. She presents ample evidence, showing a positive correlation between the increasing

14


number and intensity of educational campaigns and any significant increase in organ donation or transplantation in Poland. Piotr Lewandowski, Witold Kołłątaj, Magda Sowa, Justyna Szakuła and Małgorzata Dziedzic wrote a report “Mass Media Effect on Individuals’ Knowledge and Behaviors toward Transplantation”. They analyse a selected group of transplantation media campaigns involving celebrities. Kristina Hryncewicz and Natalia Pilarska present a research paper “Social Attitudes toward Heart Transplant Based on Łukasz Palkowski’s Film “Gods” (“Bogowie”) (2014)”. The authors analyse the behaviour, way of thinking and emotions of the main characters in the film and identify individuals representing positive and negative attitudes toward transplantation at the end of the communist regime in Poland. They show the great significance of engagement of social authorities on increase in the positive attitudes toward transplantation. The book is intended for individuals who for any personal reason express interest in human cell, tissue and organ transplantation, but also for those who show strong cognitive motivation, seek to broaden their knowledge of the subject, and have the courage to overcome the stigma, and challenge the taboo. Developments in the field of transplant medicine and the difficulties facing transplantation in the Visegrad countries, Slovenia and Turkey are discussed among specialists involved in the process of transplantation at every stage: starting from finding a potential donor, obtaining the donor’s consent (or family’s consent), harvesting donor’s cells, tissues or organs, their transport and storage until they have been transferred into the recipient’s body. This opens a new stage in providing care and monitoring of the transplant patients’ health outcomes and their families’ condition following the treatment. The present monograph also clarifies specific psychological problems that donors and recipients face. In part, the authors’ intention was to get to the roots of stereotypes that for some make it difficult to make an objective judgment regarding cell, tissue, and organ donation and reception. A careful reader will have a chance to more fully understand the changing of social attitudes toward the various aspects of transplantation due in great part to the modern education system and objective mass media coverage. Finally, the book is intended for readers who do not fear to explore the nooks and crannies of their minds to fulfill the idea of self-donation in its spiritual and intellectual capacity. The editors of the monograph wish to thank the reviewers, Professor dr hab. Lidia Cierpiałkowska (UAM, Poland) and doc. PhDr. Jana Miňhová (ZCU, Czech Republic), for their constructive reviews. We would also like to thank those at the International Visegrad Fund for their appreciation of the worthiness of idea of holistic approach to transplantation in our project.


15

We are also grateful to the authorities of Kazimierz Wielki University for their financial and organisational support during realisation of the project and to the officials from the International Relations Office for their help at all stages of the implementation of the project. Finally, our deep gratitude goes to all the partners involved in the project entitled “Contemporary Challenges in Organ Donation and Transplantation in the V4 Countries, Slovenia and Turkey” (ID 11520195) and the authors of the text published in this volume. Scientific Editors Hanna Liberska and Klaudia Boniecka Bydgoszcz, January 2016

Bibliography Borzucka-Sitkiewicz K. (2006). Promocja zdrowia i edukacja zdrowotna. Kraków: Oficyna Wydawnicza Impuls. Cierpka L., Durlik M. (red.) (2015). Transplantologia kliniczna, przeszczepy narządowe. Poznań: Teramedia. Dolińska-Zygmunt G. (1996). Teoretyczne podstawy refleksji o zdrowiu. W: G. Dolińska-Zygmunt (red.). Elementy psychologii zdrowia (s. 9–16). Wrocław: Wydawnictwo Uniwersytetu Wrocławskiego. Heszen I., Sęk H. (2015). Psychologia zdrowia. Warszawa: Wydawnictwo Naukowe PWN. Liberska H. (2011). Choroba dziecka jako stresor dla systemu rodziny. Wykład wygłoszony podczas III Ogólnopolskiej Konferencji Naukowej Psychologia w służbie rodziny. Zdrowotne aspekty życia rodzinnego. Gdańsk, 17–19.05.2011. Woynarowska B. (red.) (2008). Edukacja zdrowotna. Warszawa: Wydawnictwo Naukowe PWN.

REPORT Contemporary Challenges in Organ Donation and Transplantation in the V4 Countries, Slovenia and Turkey (grant no. 11520195)

Part I. REPORT

Contemporary Challenges in Organ Donation and Transplantation in the V4 Countries, Slovenia and Turkey grant no. 11520195

A uthors : H anna L iberska (P oland ), K laudia B oniecka (P oland ), P řemysl F rýda (C zech R epublic ), M ilos A damec (C zech R epublic ), D aniel W ettstein (H ungary ), D aniel K uba (S lovakia ), Z iga S edej (S lovenia ), A. R üçhan A kar and E wa M akuch (T urkey )

Introduction Transplantation may be considered to be a measure of a country’s level of development.The successful melding of legal, ethical, medical, social, psychological, technological, economical and religious aspects is mandatory for any transplant organization. It is nearly impossible to create or run an effective system without regard for all these components. Like all similar programmes in the world, transplantation activities in the Czech Republic, Slovakia, Hungary, Poland, Slovenia and Turkey began with spectacular successful surgeries. Different societies have different attitudes toward organ donation, often based on cultural and social factors. Family refusals to donation also vary widely within Europe, ranging from 6% in Portugal to 42% in the UK. The level of public awareness about organ donation, ethical issues surrounding it, variations in the legal procedures for donor consent, and different practices on organ registration and allocation, can influence public opinion on donation and transplantation, and individuals’ willingness to donate organs.

20

Part I. REPORT. Contemporary Challenges in Organ Donation and Transplantation…

For many transplant patients and their families, the situation they are in is not comfortable. For example: patients listed for heart transplant have a prolonged wait time, with continued deterioration, poor quality of life, and 10% mortality. Although recent bridge to transplant (BTT) studies demonstrated 1-year survival similar to heart transplantation, a doubt remains about the overall effectiveness as a treatment strategy compared with waiting and implanting a left ventricular device (LVAD) only as a last resort. What will be the future of transplantation? What will be the future of transplantation in the V4 countries and in Slovenia and Turkey? As a result of the meeting, we gained a better insight into the current situation and have a plan for the future cooperation.

Moment of registration at the conference 10.12.2016, UKW, Bydgoszcz, Poland (Author: A. Obiała)

The Czech Republic

International Cooperation in Transplant Medicine in Czech Republic P ř e m y s l F r ý d a , JUD r 1

Introduction The Czech Republic has a population of 10 million. The country has 7 transplant centres providing full scale transplant programs, ranging from the heart, lung, kidney, liver, islets, pancreas, intestine, multivisceral, vessels, heart valves and other tissues and composite tissues. Quite recently a program to test the success of uterus transplants has been launched. Approximately 1,000 patients are listed on transplant waiting lists administered by KST.

Legislation In terms of Directive 2010/53 on transplantation of organs of human origin, the country has two competent authorities, the Ministry of Health and KST. Donors in the Czech Republic are recruited on the basis of the opt-out system with presumed consent. The country has an original transplant legislation based on the Transplantation Act (285/2002) accompanied by several ministerial regulations aimed at qualification of physicians performing transplantations, medical qualification of donors, quality and safety issues, and conditions of registration in non-donors registry. Apart from these generally binding legislation sources, there are also official statements devoted to specific issues in relation to general conditions of donation and transplantation. These are issued by KST as well as General Working Procedures binding for transplant centres.

1

Deputy Director of Transplants Coordinating Center (KST), Prague, Czech Republic.

22


The Czech Republic: facts and figures The Czech Republic has a good donation and transplantation potential. According to the recent issue of Transplant Newsletter the rate of cadaveric donors (both DBD and DCD) reached 24,4 donors p.m.p. Actually the Czech Republic holds the ninth position in the World, between Austria and Italy. When calculating both cadaveric and living donors of organs for transplantation, results of the Czech Republic are even better with 327 donors in 2014 making some 31.3 donors per million. The The tables below (1–4) show the donation throughout Europe and the number of donors in the Czech Republic in the last five years (Figure 1). 18 16 14 12 10 8 6 4 2 0

2010

2011

2012

2013

2014

Figure 1. Czech Republic: living and deceased donors (Source: KST, Praha; figure prepared by authors)

International experience During the last couple of years the Czech Republic has maintained a steady growing course in the field of donation and transplantation. This was thanks to stable legislation, well established medical system, coordinated efforts of all transplant professionals and thanks to many other reasons, one of them being also participation in international projects.

1. ACCORD In alphabetical order, the first project KST participated in was ACCORD under the lead of France. The full name of the project was: Achieving Comprehensive Coordination in Organ Donation throughout the European Union. The project was divided into several working groups and the Czech Republic was taking part in accreditation and auditing of transplant centres. Our working group was

The Czech Republic. International Cooperation in Transplant Medicine in Czech Republic

23

led by Italy who presented their national auditing system and adapted it according to national conditions and environments in the participating countries. The leading party then prepared an e-learning course for all the participants, accomplished by a hands-on course in Rome. The whole syllabus has been based on quality and safety requirements of Directive 2010/53/EU as well as on concrete long-term experience and practice of Italian CNT. At the end of the course all participants passed an examination of transplant centre auditors. As KST is by law responsible for regular auditing of Czech transplant centres, it helped us prepare a really thorough and extensive system of external audits. All the checklists are bilingual so that auditors from other countries can also take part in the auditing group. Having the transplant centres audited on an international basis provides a full guarantee of the same quality standards throughout Europe. All Czech transplant centres have passed audits in the course of 2014 and 2015, with three of them being conducted by international groups of auditors from the Czech Republic, Italy and Slovakia. International auditing brings a new, higher level of safety and quality in organ transplantation leading to international exchange.

2. The Black Sea area In 2011 in Chisinau, Moldova, the European Directorate for the Quality of Medicines and Health Care of the Council of Europe launched a project aimed at improving the level of donation and transplantation in the countries surrounding the Black Sea: Bulgaria, Romania, Moldova, Russia, Ukraine, Georgia, Azerbaijan, Armenia, and Turkey. On the organizers‘ side, the Council of Europe was represented by Spain, Portugal, Italy, France, and the Czech Republic. Support was divided into several areas, such as clinical practices, process organization, transplant legislation & financing. The Czech Republic and France were responsible for the last part, the Czech Republic particularly for legislation. Our target countries were Azerbaidjan, Armenia and Georgia.

3. COORENOR This wide-scale project was carried out between the years 2010 – 2013 with 20 participating European countries. Its main purpose was to coordinate European initiative among national organizations for transplantation. At the end of the project, the situation in international exchange of organs for transplantation was evaluated as well as the main obstacles and problems hindering successful exchange.

24


4. DOPKI DOPKI was another fruitful project KST participated in. The name is a reversed acronym made of Improving the Knowledge and Practices in Organ Donation. The project was led by the Spanish national transplant organization (ONT), a long-time World leader in donation of organs. KST participated in assessment of individual patients who died in specific hospitals, their suitability to become donors and possible clinical utilization of their organs for transplantation.

5. European Organ Donor Day European Organ Donor Day is an event organized every year in one of the European countries to pay tribute to organ donors who gave new hope to those suffering and needing transplantation. On the basis of this project a “manual“ how to proceed in organizing such an event has been created. The Czech Republic joined the project with full-scale activities, such as contacting with and through media (newspapers, radio, TV, the internet), organizing concerts, holly masses, launching debates with general public and professionals and many other events. KST also organized open-door days in its offices as well as an official Run for Life starting at KST and finishing in front of the Ministry of Health. An eight-part series “The Life Hanging by a Thread“ broadcasted in the prime time by a major TV station was very popular among the EODD projects carried out in the Czech Republic, too.

6. EUROCET The main purpose of their project was to establish one major European registry of organs, cells and tissues, whether donated, procured, stored or transplanted. At the very beginning it was necessary to unify all terminology used, as in different systems and languages the terms might more or less differ. At the end of the project a strong pan-European common database has been created, and valuable clinical, theoretical, demographic and other data can now be used widely.

7. FOEDUS One of the most important European projects was launched in 2012. As there is a constant lack of organs for transplantation in all Europe, and as from time to time there may appear organs that cannot be transplanted in the country of their origin due to medical reasons (nonsuitable recipient available, laboratory mismatch, weight or size of donor and recipient not


25

matching etc.) it is necessary to make the most use of organs available. Therefore international exchange of organs should be supported and to help better utilize the procured organs. FOEDUS is an abbreviation standing for facilitation of exchange of organs donated in European Union member states. At first it was necessary to analyse conditions for organ exchange in individual member countries, followed by assessment of potential and real obstacles making the exchange hard or even impossible. At the end of the day, an IT system has been created, consisting of three major parts: (i) OREXIS – organ exchange information system operational in PC´s and tablets for office use, (ii) ETMA – European Transplants Mobile Application, bringing instant messaging and replies to organ offers with the use of a smartphone, and (iii) EUROTIP – information and communication portal containing addresses, contacts, country profiles etc.). During the first five months of its official work, the FOEDUS portal brought about significant results. The number of requests placed for necessary organ transplantation for urgent patients reached 101 (see tab. 1 below). Country

Requests made

France

49

Italy

28

Poland

8

Switzerland

6

Czech Rep.

6

Slovakia

2

Lithuania

2

Total

101

At the same time, 85 surplus organs have been offered to patients in other countries (see tab. 2 below). Country

Offers made

Switzerland

24

Spain

19

France

18

Italy

12

Slovakia

5

Czech Rep.

4

Bulgaria

1

Lithuania

1

Poland

1

Total

85

26


Out of these organs offered abroad most frequently there were hearts. For other organs (see table 3 below). Organ

Offers made

Heart

21

Liver

16

Lungs

15

Kidney

15

Small Bowel

16

Pancreas

1

Multivisceral

1

Total

85

In total, 12 lives of suffering patients have been saved during the first five months of functioning of the FOEDUS portal. Most frequently international exchange worked between Slovakia and the Czech Republic, Slovakia offering and the Czech Republic accepting 3 organs, same applies to France and Italy. In total, Italy accepted and received 5 organs from abroad, for other exchanges (see table 4 below). Exchange between SK

CZ

3

FR

IT

3

FR

ES

2

ES

IT

2

IT

CH

1

IT

ES

1

(Source: KST, Praha; author of the tables 1–4: Přemysl Frýda, JUDr)

The organs exchanged were mostly livers (5), hearts (3), kidneys (2), 1 small bowel and lungs. The outcomes of this international program are amazing as in the past all these organs had to be discarded due to no suitable recipients available within the countries of origin.

8. Giver of Life The Czech Republic has rather sophisticated and strong transplant legislation. We keep offering our legal solutions to countries intending to establish new systems in their own


27

countries. Some of these countries were mentioned in the Black Sea Project. More recently, in 2014 the Czech Republic was asked by the Ministry of Health of Kazakhstan to assist in building a new system of transplantation medicine. KST, together with our experts from IT specialists, the Ministry, and the biggest Czech transplant centre (IKEM), took part in a project named the Giver of Life. On the basis of our legislation, allocation software, risk analysis, financing models and clinical experience, Kazakhstan has significantly advanced in transplant medicine.

9. IRODAT IRODAT represents one of the oldest international databases of organ donation and transplantation data from all over the world. Thanks to its vast range, professionals can create updated and wide databases for statistical comparisons, benchmarking, etc.

10. MODE Project MODE ran in the years 2011–2012 with 11 partner countries participating in total. Its full name was Mutual Organ Donation and Transplantation Exchanges: Improving and developing cadaveric organ donation and transplantation programs. The aim of this project was to find the means how to help implement the EU Action Plan on developing donation and transplantation. The Czech Republic was the key partner preparing a thorough questionnaire for all the participating countries where specific issues were marked and those areas in which a particular country feels weak in and needs to be helped with identified, or, on the contrary, in which each country is good and can offer assistance to others. Upon evaluation of the questionnaire a series of training courses was prepared and all countries could exchange their best practices. In particular, KST offered to the other partners its help in improving cooperation with their respective Ministries, utilization of medical registries in evaluation of donors, and in traceability of organs and donors. On the other hand, KST required assistance in creating a system of in-hospital donor coordinators, in improving the system of work with living donors and, last but not least, in developing the follow-up system.

11. SOHO SOHO is a project focussed on vigilance and surveillance system registering all substances of human origin, particularly organs, tissues and cells. Thanks to this program a better vigilance and traceability can be achieved, thus improving quality and safety of donation and transplantation.

28


Assessment Thanks to our participation in all the above named programs and projects, the Czech Republic can be proud of its transplantation medicine. However, the results could not have been achieved without all the hard work of all transplant professionals. Despite of our satisfaction there are still issues we cannot be happy about. One of them is, as said at the beginning, the lack of donors and therefore the lack of organs for transplantation. There are many ways to improve this situation. We can adopt better national legislation, apply more flexible organization, advanced logistics, bring in more funds, wider education and the like. KST is working hard in all these areas. However, apart from these internal national measures there is also international cooperation which we are rather active in. Each of the above mentioned projects has had its real value, each of them has helped Czech transplantation medicine to reach better results. Nevertheless, there is one more valuable than the other, the one that brings immediate results in terms of individual transplant patients. FOEDUS is aimed at two significant points: (i) a country can place a request for an organ which is immediately needed for an urgent patient who is going to die within one or two days if such an organ is not found, and (ii) a country can offer an organ for which there is not a suitable recipient available and which would therefore have to be discarded. In the past these situations also occurred sometime, and had been dealt with, however there was not a systemic approach, it was usually a collaboration between two countries, or even between two foreign clinics only. FOEDUS project established a nonstop offers/requests being made available to all participating countries simultaneously. Later on, FOEDUS even started using smart phones so that the national coordinators on duty can be informed in the order of minutes and seconds, and in the same way they can respond to a message. Allocation of organs for transplantation is rather a complicated process with many conditions to be met: weight, size, age, blood group, laboratory data, histology findings, clinical history of both donor and recipient etc. All these data must be shared in a short time (due to cold ischemia time of an organ), evaluated thoroughly, and match between donor and recipient must be found. In some cases it is not possible to find a suitable recipient for organs procured from a donor in a particular country. Here FOEDUS helps a lot, saving lives.


29

International exchange organizations At present there are three existing international organ exchange systems in Europe, Scandiatransplant, Eurotransplant, and South Alliance for Transplant (see: map below). Each of them has its specific features. Scandiatransplant is a network established by the Nordic countries, Denmark, Finland, Iceland, Norway and Sweden. It covers the population of 26 million people, and the average rate of donation reaches 17,3 p.m.p. Due to vast areas and long distances, cooperation between individual transplant centres is of important value. Eurotransplant is the most traditional European organ exchange organization. It consists of Austria, Belgium, Croatia, Germany, Hungary, Luxembourg, the Netherlands, and Slovenia, covers total population of 125 million with the average rate of donation 20,7 p.m.p. The main feature of Eurotransplant is one supranational waiting list. Individual countries report all donors to the headquarters in Leyden, the Netherlands, and all organs are allocated from there. South Alliance for Transplant (SAT) is the youngest organization of all three. Contrary to Eurotransplant, SAT is an alliance of national transplant organizations administering their national waiting lists. International exchange applies only in cases of super-urgent recipients and surplus of organs non-allocable in the country of origin. The Member Statesare France, Italy, and Spain, total population is 201 million inhabitants, average donation rate 27,9 p.m.p. There are also observers – Czech Republic, Portugal and Switzerland – however these are not fully integrated. Scandiatransplant countries Eurotransplant countries South Alliance for Transplant

Map 1. International organ exchange systems in Europe (Source: KST)

30


The potential As it can be seen on the map of Europe, the existing three international transplant networks cover only a part of the continent (map 1). Altogether they represent approximately 351 million population. On the other hand, when we count up all the “white“ European countries the total figure is 301 million people. And as Turkey has joined this Visegrad 4 (V4) forum, the population of countries which could cooperate in international organ exchange would reach 372 million, which is more than the population of Scandiatransplant, Eurotransplant and SAT together. It is obvious that all the “white countries“ will not join international transplant activity due to many, mostly economical, reasons. However, there are several countries which could take the lead in the process of integration for this highly humanistic purpose. The Visegrad 4 countries represent well developed states with sufficient resources, working infrastructure, close distances and experienced workforce (see: map 2). Together they have 65 million population with the average rate of donation 18,0 p.m.p. They should become the builders of the pyramid of close cooperation in donation and transplantation. Others will follow suit, Serbia, Byelarus, Romania, Bulgaria, Moldova …

Map 2. Visegrad 4 countries (Source: KST)

V4 countries have already started to cooperate closely. The Czech Republic and Slovakia and Poland are active in organ exchange through FOEDUS platform. During


31

the first five months of operation three organs were exchanged between these countries. At the same time Czech and Slovak experts have passed examinations of international auditors of transplant centres. All these processes can be joined by experts from other countries. For example, Byelarus transplant coordinators are going to visit KST in the Czech Republic to agree on further mechanisms of cooperation in January. Czech surgeons are preparing to visit Polish transplant centres in order to establish the common rules for organ procurement. A training of transplant coordinators in FOEDUS platform will take place in Prague on February. Lithuanian auditors have been asked to join the international auditing team in March during an audit of the biggest transplant center in Banska Bystrica, Slovakia. We have the potential, and we also have the means to use it. One of the most important factors in transplantation medicine is time. Relevant information must be shared quickly. Furthermore, we must be aware of the need to protect sensitive personal data. Both these conditions are met in case of FOEDUS IT platform. It is free, apart from a basic maintenance fee in the order of several hundreds of Euros per year. It is available on the Internet to any country. It works non-stop, 24 hours a day and 7 days a week. The data are password protected. So far 24 European countries have been listed, but not all of them use the system actively. However, those who use it do know its potential.

Conclusion There is a constant lack of organs for transplantation. In many countries organizational, legislative and financial potential has nearly reached its limits. Should we want to increase the number of transplanted patients, it is inevitable to cooperate with other countries. We have the potential and we have the tools.

Hungary

Where We Come From, Where We Are Going? – Current Challenges and Development of Transplantation in Hungary D a n i e l W e t t s t e i n , MD 2

Introduction As a member of a valuable cooperation initiated as a V4 project, we are delighted to be able to discuss current challenges in organ transplantation within the context of international ollaboration. The cooperation of the Visegrad four, and also other neighbouring countries has similar historical roots and similar economic situation of our countries. Obviously, in order to keep up to date with the changing world, it is necessary to maintain collaboration in many fields, including science. This is also the case with organ transplantation, as our countries have developed similar rules and regulations regarding donation, faced similar difficulties and achieved very good results in various fields. The potential of cooperation is anchored in the tradition we all share. However, we can also benefit most from recognizing the differences. To elucidate the present status and the direction the Hungarian transplantation is heading for, we should go back to the origins of Hungarian transplantation.

History of Hungarian transplantation One of the best known Hungarian physicist was Ignác Semmelweis, who recognized the importance of washing hands when he observed mothers dying from childbed fever passed on by the doctors performing autopsies before examination. Semmelweis was

2

Department of Transplantation and Surgery, Semmelweis University, Budapest, Hungary.

Hungary. Where We Come From, Where We Are Going? – Current Challenges and Development…

33

ignored and rejected by the profession of his time, his practice of washing hands spread only after his tragic death. At the time when Alexis Carrel developed the triangular vascular anastomosis for which he was honoured with the Nobel prize, the Hungarian surgeon, Imre Ullmann had already performed a successful kidney autotransplantation in a dog (1902) and later allotransplantation between dogs and xenotransplantations between a dog and a goat. Ullmann did not publish his experiments, and his colleagues regarded them as technically exciting but of no clinical use. However, Alexis Carrel recognized Ullmann’s pioneering work in kidney transplantation. Semmelweis’ terrible example taught us not to reject new methods, simply because they contradict established norms or paradigms. Ullmann’s lesson was that the scientific elaboration of our observations and practices is of vital importance. With the first living kidney transplantation performed in 1962, Hungary was the fourth country in the world following the US, the UK and France in a successful human kidney transplantation. The operation was performed by András Németh in Szeged. The kidney transplantation program was initiated in 1973 by Ferenc Perner, who founded the Clinic for Transplantation and Surgery in Budapest in 1994, and launched the liver transplantation program. The first liver transplantation was performed earlier by Andor Szécsény in 1983, the first heart transplantation in 1992 by Zoltán Szabó, the first simultaneous pancreas and kidney transplantation in 1998 by Károly Kalmár-Nagy in Pécs, and the first lung transplantation in 2015 by Georg Lang and Ferenc Rényi-Vámos in Budapest.

Organ transplantation centres in Hungary Kidney transplantation is performed in all four medical universities of Hungary, the kidney transplant programs were launched in 1979 in Szeged, in 1991 in Debrecen and in 1993 in Pécs. The Budapest centre has been responsible for liver transplantation since 1995. Pancreas transplantations are performed in two centres: Budapest (2004) and Pécs (1998). Heart transplantations are shared between two centres in Budapest, paediatric transplantations are performed in Gottsegen György National Institute of Cardiology, and the majority of heart transplantations are performed at the Cardiovascular Centre, Department of Cardiovascular Surgery, Semmelweis University. Lung transplantation is performed in the Department of Thoracic Surgery, Semmelweis University.

34


Interview for the media: Daniel Wettstein, MD (Hungary) (Author of photo: A. Obiała, UKW, Bydgoszcz, Poland)

Organ donation in Hungary The first full-time organ transplantation coordinators were employed at Perner’s Clinic from 1994. Later on, the Hungarotransplant was founded to organize the donations nationwide between 2001 and 2006. In 2006, the National Blood Transfusion Service took over the duties of coordination, and established the three levels of coordination: the national coordinator, clinical centre coordinator and hospital coordinator. The legal form of donation in Hungary is the presumed consent, which dates back to Maria Theresia (1740–1780), empress of the Austro Hungarian monarchy. Her comprehensive regulation of the state education was the „ratio educationis”, where she ordered among others a mandatory autopsy of patients deceased in a hospital. Since a donation is an autopsy under operative circumstances, presumed consent has been applied in Hungary since the very beginning of transplantation history. The National Transplant Register is responsible for registering the refusals, but the consent of the family is always obtained as well, which leads to approx. 10% refusals.

Hungary. Where We Come From, Where We Are Going? – Current Challenges and Development…

35

Eurotransplant membership The last few years have brought new developments in the Hungarian transplantation. Hungary has joined the Eurotransplant community, and spectacular development was achieved in many fields of organ transplantation. The professional circumstances were ready for the development, and the political willingness and well–established program made it possible to raise the number of donors, increase waiting lists, promote education among the public and also among healthcare professionals and join the Eurotransplant. One of the greatest achievements of 2015 was the first lung transplantation in Budapest, and the initiation of the lung transplantation program by Georg Lang and Ferenc Rényi-Vámos. As Hungary became a full member of the 135-million Eurotransplant community in 2013, the Hungarian organ transplantation reached a new milestone. At the same time, the previous years’ organisational investments showed their results together with the professional and financial developments in the field of kidney, liver, heart and lung transplantation. The results of the past two years of Eurotransplant membership makes us look into the future with great optimism. • Hungary’s greatest benefits of joining Eurotransplant: • Better HLA matching (two fold increase in zero mismatch transplantations) • Better access organs of high urgency • Paediatric transplantation (50% of donor organs came from abroad) • Transplanting highly immunized patients • Overall approx. 20% of the organs came from abroad

Hungarian transplantation in numbers An overall increase in organ donation between 2013 and 2014 was 31%, and with this results, Hungary ranked 12th in Europe with 20.5 cadaver organ donations performed per million people (pmp). Kidney transplantation had an increase of 36%, and among the 76 Eurotransplant centres Budapest performed the most kidney transplantations, with 20% of living donation. In total, 236 kidney transplantations were performed in Budapest during 2014. Simultaneous pancreas and kidney transplantations are performed in Pécs and Budapest, and the number is similar to the average of other Eurotransplant countries with 1.4 transplantations per million people. Pancreatic islet transplantation was performed during the earlier 2000’s in 8 cases in experimental settings, but – similarly to the experiences of other greater centres – the long term outcomes were not convincing.

36


The number of liver transplantations developed spectacularly, the increase was 67% between 2013 and 2014, and 98% between 2013 and 2015, with 89 liver transplantations performed in 2015 (see: Figure 1 below). The number of heart transplantations has been growing steadily over the past years, with an increase of 29% between 2013 and 2014. The Department of Transplantation and Surgery, Semmelweis University reached excellent numbers and quality in terms of kidney and liver transplantations over the past years. This permanent increase was reached by adopting international expertise into the Hungarian setting. Further development is needed to keep up with international trends. Therefore we are planning to introduce a machine perfusion of kidney grafts, and the reinitiating of the living donor liver transplantation program. 100

89

90 75

80 70 60 43 44 45 41

50 40

31

2015

2014

2013

2012

2011

2010

2009

2008

2007

2006

2005

2004

2003

2002

2001

2000

1999

1998

0

10

1997

10

1995

20

45 40 43 41 41

22 23 19 17 16 18 19

1996

30

36

Figure 1. Number of liver transplantations in Budapest (Source of data: Department of Transplantation and Surgery, Semmelweis University; Author: Daniel Wettstein MD)

Conclusion We believe that the cultural, traditional and financial diversity of the European organ transplantation centres offers a great opportunity to educate transplantation personnel and perform collaborative research. The motivation and passion of the professionals as well as the wisdom of the collective is needed to promote the issue of transplantation into the right direction. As a member of this valuable cooperation we would like to snatch every chance for synthesizing our knowledge and sharing our experiences to further develop organ transplantation programs in our countries.

Poland

Challenges and Limitations of Transplantation in Poland Dr

hab.

Hanna Liberska,

prof.

UKW 3

Introduction

Map of Poland (Source: http://www.igeomap.pl/epowiaty/images/polska_woj.gif)

Transplantology is a fast-growing branch of Polish medicine. Organ transplantations have been performed in Poland for many years, however, a dramatic increase in the interest in this area of medicine dates back to the first successful heart transplant performed Department of Social Psychology and Studies on Adolescents, Institute of Psychology, Kazimierz Wielki University, Bydgoszcz, Poland. 3

38


by Prof. Religa on the 5th of November, 1985, at the Klinka Kardiochirurgii WOK (Cardiosurgery Clinic) which later became the w Śląskie Centrum Chorób Serca (Silesian Centre of Heart Diseases) in Zabrze. Professor Religa was for a long time engaged in the possible transplant of a ‘living’ heart as well as in construction of devices assisting the work of the cardiac muscle and development of the so-called artificial heart. Work in this area was carried out at the Śląskiej Akademii Medycznej (Silesian University of Medicine) in Zabrze. The first attempt at heart transplant in Poland was made 16 years earlier, in 1969, still earlier the first attempts at the kidney transplant were made, in 1965 year from a dead donor and in 1966 from a living donor. The first successful transplantation of the kidney and pancreas was made in 1988, liver in 1990, heart and lungs in 2001, hand in 2006 and face in 2013. (https://pl.wikipedia.org/wiki/Przeszczepianie_narz%C4%85d%C3%B3w).

Barriers to transplant The barriers to transplantation are made in the minds and are related to the believe that the body cannot be tampered with. They are enforced by the reports on unsuccessful transplantations and uncorroborated or undocumented accusations on procedural errors or improprieties. Despite its long history, the issue of transplantation is very sensitive to bad publicity, ignorance and political influence. For the last fifty years the number of transplant surgeries was slowly but steadily growing. Table 1 below illustrates the number of transplanted organs in the years 1994–2014. Table 1. The number of transplanted organs in the years 1994–2014 Year

Number of transplanted organs

1994

428

1995

435

1996

444

1997

666

1998

698

1999

758

2000

1028

2001

1127

2002

1204

2003

1334

2004

1338

2005

1401

2006

1258

Poland. Challenges and Limitations of Transplantation in Poland

2007

962

2008

1148

2009

1123

2010

1349

2011

1472

2012

1611

2013

1610

2014

1620

39

(Source: Poltransplant Bulletin, 2015)

The organ transplantation centres in Poland POLTRANSPLANT – is the organizational and coordinating centre for transplantation in Poland. It is the state budget financed institution controlled by the Minister of Health. It was founded in 1996. The functioning of POLTRASPLANT is regulated by art. 38 entry 3 of the Act of Law on donation, storage and transplantation of cells, tissues and organs of the 1st of July, 2005, with amendments of 2009. The legal basis for POLTRANSPLANT activity is the directive of the Ministry of Health of the 2nd of July 2010 (Journal of Laws of the Ministry of Health of the 21st of July, 2010, No. 9 entry 58). In Poland there are many medical centres specialising in transplantations. The majority of them are in the cities with functioning medical universities, for instance transplantations of kidneys are performed in 12 cities in 38 clinics, transplantations of pancreas – in 3 cities at 10 clinics, transplantations of heart – in 5 cities and 6 clinics, those of lungs in 4 cities at 6 clinics and those of liver in 5 cities and 8 clinics. Transplantations of the intestines are performed only in one city at one clinic. Transplantation of cornea can be performed in 15 cities and there are also 15 centres for marrow donation (source: http://www.poltransplant.org.pl/ods.html).

The donation According to statistical data shown by Poltransplant at their website, in the last 5 years a substantial increase in the number of potential donors of cells, tissues and organs has been observed (table 2).

40


Table 2. Organ donation in Poland in years 2011–2015 Year

Number of potential donators of organs, tissue and cells

2011

68557

2012

123825

2013

539179

2014

768341

2015

927702

(Prepared by author; source of data: http://www.poltransplant.org.pl/statystyka)

Filipiak at al. (2015) have collected data from the Polish Central Unrelated Potential Bone Marrow Donor and Cord Blood Registry, the Polish transplant registries and World Marrow Donor Association. They compared statistics on hematopoietic stem cells donations and transplantations in Poland in the years 2010–2014. Over these five years the number of registered potential hematopoietic stem cells donors in Poland increased from about 146,000 to over 750,000 and the number of patients qualified to hematopoietic stem cells transplantation from unrelated donors increased from 557 in 2010 to 817 in 2014 (Filipiak at al., 2015). Now (in December 2015) the situation is even better.

Polish transplantation in numbers In the years 2010 – 2015 the number of organ transplants from dead donors varied (table 3). The highest was the number of kidney and liver transplants, then heart transplants, pancreas and pancreas and kidney transplants, the smallest was the number of lung transplants. Table 3. The number of organ transplant from dead donors in the years 2010–2015 Organ

2010

2011

2012

2013

2014

2015

949

1002

1094

1076

1064

958

20

34

43

37

37

41

Liver

217

282

314

318

336

310

Heart

79

80

79

87

76

99

Lung

12

15

16

17

18

24

1277

1413

1546

1536

1531

1432

Kidney Pancreas or pancreas and kidney

Total number of transplants


Much fewer organs were transplanted from living donors (table 4), which is related to immunological restrictions. The highest number of kidney and liver transplants were

Poland. Challenges and Limitations of Transplantation in Poland

41

performed in 2015. The greatest number of transplantations of cornea were performed in 2014. In the period 2010–2015 the highest number of transplantations from living donors took place in 2014. Table 4. Transplantation of organs from living donors in 2010–2015 Year

Kidney

Liver fragments

Upper limb

Cornea

2010

50

20

0

884

2012

51

14

2013

57

18 1

939

2014

55

30

2015

60

22

884


In 2014/2015 Poltransplant did not note any significant increase in organ donation or transplantation in Poland. Cadaveric donors remain the most important source of organs available for transplantation, supplying most organs in our country. According to Poltransplant Biuletyn Informacyjny (Poltransplant Information Bulletin) (2015), 782 possible donors were registered in the national transplant list in 2014. Moreover, 594 (76%) of these people became real donors and organs of 572 (73%) persons were made use of. In 2013 there were 775 registered donors. We did not see any significant rise in donation in 2014 compared with 2013 (Poltransplant Biuletyn Informacyjny, 2015) According to Poltransplant Biuletyn Informacyjny (2015) 1,619 patients received new organs in 2014 (from all group donors). Doctors transplanted 1,121 kidneys (55 organs were donated by living donors), 37 pancreas (28 pancreas were transplanted simultaneously with kidneys), 366 livers (including 30 fragments from living donors donated for children), 76 hearts, 19 lungs, one upper limb. To sum it up, there were 1,661 transplantation procedures run on 1,619 recipients. Most of the patients stayed alive and most of the transplanted organs were not rejected. There were still 1,538 patients waiting for a transplant by the end of 2014. At the end of 2015, there were 927,702 potential donors registered on Poltransplant’s list. It indicates a positive attitude of Polish people towards transplantation.

International cooperation Polish Centre POLTRANSPLANT is involved in the same programmes as the analogous centres from other countries from Visehrad Group such as ACCORD, EUROCET, COORENOR, FOEDUS, DOPKI, ETPOD, EULID, LIDOBS, EULOD.

42


Conclusion Transplantation has been gradually developing in Poland, although in 2007 a breakdown in this area of medicine took place, but already in 2010 the number of transplantations was higher than that from 2006. Since 2010 the situation seems to have stabilised, considering both transplantations from dead and living donors. As in other countries from the Vysehrad group, also in Poland the number of transplantations from dead donors is higher than from living donors. In general a global tendency towards increasing number of transplantations from living donors. It is related to the progress in immunology, increasing level of medical methods and increasing competence of surgeons. Besides, the role of education programmes and medial campaigns on this issue must be emphasised. Particularly sensitive to such means of education are young people, pupils and students.

Source: http://www.poltransplant.org.pl/.

A recent survey on attitudes towards organ donation and transplantation showed positive social attitudes. According to CBOS’(2012) survey on organ transplant, 96% of the respondents accepted the idea of organ transplant and 85% agreed to become an organ donor after their death. The results were quiet positive, uplifting and letting us hope for the better future. Nevertheless, looking at the statistics on giving consent for organ donation and the actual donations, the situation does not seem so heartening any longer. Another disturbing result was the fact that not all medical professionalist, priests and nuns have full knowledge about legal regulations and recognition of death (CBOS, 2012). There is a need for a national education program that could be implemented at all education levels.

Slovakia

Transplant Program in Slovak Republic – Small Country Point of View D a n i e l K u b a , MD 4

Introduction The Slovak Republic has a population of 5.4 million inhabitants. There are five transplant centres in the country. Four of them perform kidney transplantations both from deceased and living donors. The two centres provide liver transplantation and there is one centre for heart transplantation which performs transplantation in adult and children patients. There were approx. 450 patients awaiting transplantation at the end of 2014.

Legislation There is an opt–out system with presumed consent. The country legislation is based on law 576/2004 „Act about the health care and services”. The Directive 2010/53/EU was adopted into this act. According to the Directive there is one authority competent, the Ministry of Health of the Slovak Republic. National transplant organization is a delegated body to handle organ and tissue procurement and transplantation.

Organ transplant program Coordination We have adopted “the Spanish model” in the coordination of organ transplant program. The country is divided into four regions according to transplant centres (see: Transplant International ª 2011 European Society for Organ Transplantation 24 (2011) 333–343; 4

Director of National Transplant Organisation (NTO), Bratislava, Slovakia

44


There are three levels of coordination in Slovakia. The first are the hospital coordinators in each hospital with an ICU unit. This level is responsible for the donor search and indication. Every donor is consulted with a regional transplant coordinator (the second level). Regional coordinators are responsible for managing and examining donors. They also call for procurement and transplant teams. They are responsible for the transport of procured organs. Regional coordinators cooperate with the National Transplant Organization (NTO), a national coordinator responsible for national and international allocation of procured organs. The National Transplant Organization was established in 2013 by the Ministry of Health under law 576/2004. NTO maintains national transplant registries. They included waiting lists for the kidney, liver and heart. There are also donor registries for deceased and living donors. Next part is the transplant registry. NTO handles the registry of persons who rejected the donation of organs after death. The part of the registry is a follow–up of transplanted patients and living donors. All the registries are in the Transplant Information System Slovakia (TISS) operated on the 24/365 basis and is available to users via the Internet. Users have different access to the system depending on their role in the transplant program (doctors, coordinators, etc.). The important part of NTO is a reference laboratory for the HLA typing.

Procurement activities There were 64 realized deceased donors in 2014 in Slovakia (Picture 1). As statistics show, there has been a decline in donation rate since year 2007. This is the main problem in the transplant program in Slovakia and is currently the greatest challenge for the program. We have analyzed the situation and together with the Ministry of Health, health insurance companies and the NTO we have agreed to support the donor indication at the level of all indicating hospitals. The agreement has been in place since the end of 2015 and the first results look very promising. In 2015 there were more than 90 deceased donors in Slovakia. 120

107

70 55

52

64

0

91 69

71

60

64

64

12 .03

5

11 .28

17 .11

16 .17

.47 14

3

3

12 .0

12 .0

.34 10

.16 13

7 9.7

.26 11

.53

1

40 20

86

13 .3

60

20 .1

60

56

77

12 .97

80

10

Number and pmp

100

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Year

Picture 1. Deceased donors in the Slovak Republic (Source: National Transplant Organization from the national transplant registry in Slovakia)

Slovakia. Transplant Program in Slovak Republic – Small Country Point of View

45

Organ procurement in the transplant centres regions There are different procurement rates in the transplant regions. The best region is Martin transplant centre with more than 20 donors pmp in 2015. We have evaluated the rates every year and regional coordinators are educating indicating hospitals every year. It is obvious that there are several reasons for various activities in the regions and we have to evaluate and find region–specific solutions.

Multi organ procurement There is approx. 50% MO procurements in Slovakia. In the last 10 years, there is more demand for heart and liver, because both programs are in place in Slovakia. The situation for Slovak patients has improved as compared to the period, when we exported organs to the countries which transplanted some of our patients. This is still the case for lungs, our patients are transplanted in Austria, because owe lack an adequate program in our country.

Donors age The situation in Slovakia is similar to all European countries. With ageing population we have to find older donors. The average donor age increased from 35 years in 2000 to 47 years in 2014. This is more than 10 years of average age in 15 years of a follow–up.

Negative registry Every Slovak citizen has the right to reject the donation of organs after death. There were 938 people registered for rejecting organ donation at the end of 2015. There was a significant grow in 2014 because of negative reports in mass media about tissue procurement. Transplant community had to explain the whole situation in the media and there was a decline of rejecting persons in 2015. The number is low according to population.

Transplantation The transplantation numbers reflect the donation numbers because of low exchange rates. There were 110 kidney transplants from deceased donors and 15 kidney transplants from living donors in 2014. Transplantations from living donors are the small part of the program, but there is an improvement in 2015. The overview of the kidney transplant activity is in Pictures 2 and 3.

46

Part I. REPORT. Contemporary Challenges in Organ Donation and Transplantation… 250,0

pmp

Total

195

200,0

169 145

Number

150,0 99

98

100,0

58

82

153

115

18,4

10,9

15,0

133

21,8

25

108

110

20,3

20,7

110

80

50,0 15,4

116

18,6

21,6

36,7

20,7

27,3

28,8

31,8

0,0 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Year

Picture 2. Kidney transplants from deceased donors (Source: National Transplant Organization from the national transplant registry in Slovakia)

35.0

pmp

Number and pmp

30.0

29

24

25.0

tx

21

21

20.0 15.0 10.0 5.0 0.0

7 1.3

4 0.8

2.8

19

18

15

4.5

3.9

3.4

5.5 2.6

15

13

14

10 3.9

3.6

8 1.5

2.4

3 0.6

1.9

2.8

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Year

Picture 3. Kidney transplants from living donors (Source: National Transplant Organization from the national transplant registry in Slovakia)


47

Heart transplantation There were 17 heart transplantations in 2014. The overview is in Picture 4. 30 pmp

Number and pmp

25

26

Number

23

22

20

5 0

19

19 17

15 10

21

9

8

1.7

1.5

7

7

7

1.3

1.3

1.3

9 1.7

11

11

2.1

2.1

14

9 1.7

4.9

4.2

4.3

4.0

3.6

3.6

2.6

3.1

1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Year

Picture 4. Heart transplantations (Source: National Transplant Organization from the national transplant registry in Slovakia)

Liver transplantation

Number and pmp

There were 23 liver transplantations in 2014. The liver program is quite young. The centre in Banska Bystrica performed first 100 transplantations in 2015. The overview is in Picture 5. 50 45 40 35 30 25 20 15 10 5 0

33 24

29 25

22

12

23

4.5 6.2 4.7 5.5 4.1 4.3 3 2.3 2 1 1 0 0 0 0.0 0.6 0.4 0.2 0.2 0.0 0.0 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Year 5 0.9

Picture 5. Liver transplantation (Source: National Transplant Organization from the national transplant registry in Slovakia)

48


Waiting lists The biggest waiting list in Slovakia is for kidney. At the end of 2014 there were 368 patients awaiting transplantation. But contrary to the developed countries the number of patients decreases. In 2003 there were 771 patients on the WL. So over the period of 10 years the number of patients decreased by half. There are some problems resulting from a reduced WL. First of all the chance to find the HLA donor recipient pair with minimum mismatches is very low. The find of a suitable donor for highly sensitized patient is also very low, we have some patients waiting for transplantation for 10 years. The overview of the number of patients on the kidney waiting list is in Picture 6. There are about 30 patients on the waiting list for heart. The problem in a small country is to find a donor for high urgent patient in time. On the waiting list for liver there are about 60 patients. The situation in donor rate is good, but sometimes there is a lack of a suitable recipient on the WL and the exchange of organs should help to find recipients for all procured organ. Also the donor for hyperurgent patients is the same problem as in heart transplantation. 900 800

771

759

741

700

726

Počet

600

546

500

507

448

400

369

382

376

395

368

2010

2011

2012

2013

2014

300 200 100 0

2003

2004

2005

2006

2007

2008

2009 Rok

Picture 6. Number of patients on the waiting list for kidney (Source: National Transplant Organization from the national transplant registry in Slovakia)

Public awareness It is an important part of the transplant program to inform the public about donation. The Slovak transplant society in cooperation with the Ministry of Health and the National Transplant Organization in 2015 launched the campaign “7 lives” to promote information about donation. The motto was that everybody can save seven lives by donating their organs after death. The campaign was organized with electronic and print media. The stories of transplanted patients were included.


49

There are active patient’s in the organizations of transplanted patients in Slovakia. Medical professionals help them with the lectures about the transplantation. They have organized the travelling exhibition of photographs of transplanted patients in 10 cities connected with discussion about the donation and transplantation named “Beauty of the moment”. Church in Bratislava is also involved in the cooperation and at the end of last year there was the second holy mess for the people who donate their organs after death. At a regional level, there “Transplant day” – an event organized for transplanted patients and the public with accompanying discussions, music and entertainment.

International projects and cooperation The Slovak Republic took part in the ACCORD project, within a work package dealing with living donor registry. We have participated in a pilot study on “registry of registries. We are also participating in FOEDUS project in the part regarding the exchange of surplus organs with a new electronic tool developed by the Czech Republic team.

Conclusion Challenges and bariers The major challenge for the participating countries is to increase the number of donors to meet the needs of patients on the waiting lists. We could exchange the experience in each country to raise the procurement activity. The topic of the meeting was what we can do in the field of international exchange of organs. The question is how and what patients can profit from international organ exchange? The first is the group of highly–urgency patients waiting for liver and heart. The second is the group of highly sensitized patients awaiting for kidney transplantation for a very long time. There is also a question about the surplus of organs when we are not able to find a recipient at a time. FOEDUS give us a tool and show us how to manage this situation. There are good geographic conditions especially for the Czech Republic, Poland and Slovakia to exchange organs. The international exchange will require signing an agreement with clear rules for the exchange and the willingness of the participating countries to start this process.

Slovenia

National Organ Donation and Transplantation Program in Slovenia Z i g a S e d e j , MD 5

Introduction What is Slovenia Transplant? The Institute for transplantation of Organs and Tissues of the Republic of Slovenia. It is the central national institution linking together all the institutions working in the field of transplantation.

(Source: http://www.slovenija-transplant.si/)

Legislation Quality and safety of the use of tissues and cells for medical treatment is additionally to the The Removal and Transplantation of Human Body Parts for the Purposes of Medical Treatment Act (Ur.l. RS, št. 12/2000) (http://www.slovenija-transplant.si/index. php?id=presajanje-tkiv&L=2). Traumatology department, UMC, Institute of the Republic of Slovenia for the Transplantation of Organs and Tissues, Ljubljana, Slovenia. 5

Slovenia. National Organ Donation and Transplantation Program in Slovenia

51

Infertility treatment and procedures of biomedically-assisted procreation act (Ur.l. RS, št. 70/2000). Regulated by: Act on quality and safety of human tissues and cells, for the Purposes for medical treatment (Ur.l. RS, št. 61/2007) which is implementing three EU Directives in Slovene legislation.

The task of Slovenia Transplant • • •

promotion and support of the donor and transplant program coordination of transplant activities on the national and international level supervision of all transplant activities on the national level

On the basis of the transplant law: THE REMOVAL AND TRANSPLANTATION OF HUMAN BODY PARTS FOR THE PURPOSES OF MEDICAL TREATMENT ACT Adopted by the Parliament of the Republic of Slovenia (RS) and issued by the President of the RS in the year 2000, new implementing regulations were issued by the Minister of Health: In the years 2001/2002 the Minister issued: • the procedure of reporting on dead persons considered to be potential donors • the structure of the Ethics Commission for Transplantations, the appointment of its members, and the rules on the Commission’s work. • rules on detailed medical criteria, the method and procedure for pronouncing brain death, and the structure of the brain death determination commission.

• • • • •

• •

In the year 2003 the Minister issued: the policy on the management of waiting lists the policy on cooperation with related foreign and international organisations, and on the exchange of human body parts with other countries the policy on keeping records of removals and transplantations the policy on the preservation and transport of human body parts intended for transplantation the conditions for the development of a national programme for bone-marrow transplantation from unrelated donors and on the functioning of the register of potential bone-marrow donors the policy on safeguarding donors’ and recipients’ personal data the procedures of collection, storage and use of haematopoietic stem cells.

52


The Minister has nominated the laboratory to carry out tissue-typing and histocompatibility tests for the needs of Slovenia. We are preparing also the following regulations: • on the policy of the work of transplant coordinators in health institutions, • on the staff, premises, technical and other requirements to be met in order to be granted permission to carry out services of removal, transplantation and preservation of body parts, • the policy on testing donors for transmittable illnesses.

First day at the Conference: lecture: Ziga Sedej (Slovenia) and Hanna Liberska (Poland) (Author of photo: A. Obiała)

International Integration EUROTRANSPLANT From January 2000 Slovenia has been part of Eurotransplant. Eurotransplant is responsible for the allocation of donor organs in Austria, Belgium, Croatia, Germany, Hungary, Luxembourg, the Netherlands and Slovenia. This international collaborative framework includes all transplant hospitals, tissue-typing laboratories and hospitals where organ donations take place.


53

As mediator between donor and recipient, Eurotransplant plays a key role in the allocation and distribution of donor organs for transplantation. The mission statement and goals of Eurotransplant express the foundation’s main target: to ensure an optimal use of available donor organs. The allocation system is based upon medical en ethical criteria. Through conducting and facilitating scientific research, Eurotransplant aims at a constant improvement of transplant outcomes.

FOEDUS Slovenia – as Czech Republic and Poland – participates in the program Fodeus. The focus of this action (Foedus) is on facilitating collaboration on organ donation between national authorities in the EU under art 3.1.4.2. of Community Action Health Programme 2012. Specific objectives: • Reduction of logistical and organizational issues arising in cross border organ exchanges. • Identification of financial pathways for coverage of cross border organ exchanges in different EU countries and patient mobility for organ transplantation. • Development of common donor forms (organ specific) to be used for international cross-border exchanges. • Increase in number of bilateral/multilateral agreements for cross border organ exchanges. • Increase in number of exchanged organs. • Optimization of public awareness initiatives toward organ donation and cross border exchanges.

ACCORD The project “Achieving Comprehensive Coordination in Organ Donation throughout the European Union – ACCORD”, is a Joint Action (JA) submitted and approved by the call for proposals 2011 of the Health Programme 2008–2013, DG SANCO (European Commission). ACCORD intends to strengthen the full potential of the Member States in the field of organ donation and transplantation in order to improve the cooperation between them and to contribute to the effective implementation of the EU Directive 2010/53/EU and the Action Plan on Organ Donation and Transplantation (2009–2015): Strengthened Cooperation between MS. In particular, ACCORD intends to: • Improve the Member States’ information systems on live organ donation through the provision of recommendations on the design and management of structured live

54

•

•

•

• •


organ donor registries and through setting down a model for supranational data sharing in this field. Describe the usual pathways applied to patients with a devastating brain injury and to explore their impact on the potential of donation and on the realization of the deceased donation process across European Union countries. Develop and prove by implementation an acceptable and effective rapid improvement toolkit that supports modifications in end-of-life management that promote donation, adapted to each identified end-of-life care model. Implement practical collaborations between European Union countries for the transfer of knowledge, expertise or tools in specific areas related to the Directive 2010/53/EU and the Action Plan on Organ Donation and Transplantation (2009– 2015), based on comprehensive and specifically prepared protocols. To provide recommendations for future twinning initiatives in organ donation and transplantation. To disseminate and ensure the sustainability of the results and products of the ACCORD project.

Transplant Procurement Management (TPM) Transplant Procurement Management (TPM®) is an educational program that since 1991 has trained over 10.000 participants from 100 countries. TPM are designed to adapt the course content to the specific needs of the diverse countries’ situation.

Objectives The objectives of the foundation are focused on the following general lines: • Attract talents in different fields that allow discover the needs and develop the opportunities for growth and improvement. • Develop ideas and projects linked to the scientific and technological projects related to the donation and transplantation. • Contribute to the development of regions or countries in the area of the donation and transplantation of organs, human tissues and cells. • Collaborate in the development of a greater number of organs, tissues and/or cells in accordance with the demand and needs of the population. • To ensure that their beneficiaries meet the standards of quality, technical and ethical for obtaining, processing, preservation and distribution of organs, tissues and cells addressed to the transplant human or for research.


•

55

Maintain relationship with the different health institutions of different countries where it is carried out the projects, the international associations, university hospitals, scientists and beneficiaries to take an attractive and dynamic program for the exchange of information for the better development activities.

Transplantation of Organs and Tissues in Slovenia – today In Slovenia we transplant heart, liver, kidney, pancreas, cornea, bone marrow, skin. The situation of transplantation in the countries of Visegrad Group, Slovenia and Turkey is diverse in the worldwide perspective (table 1–4). Table 1. Worldwide heart transplant 2014 (PMP) Country • Slovenia (European model) USA (USA model)

PMP

Country

PMP

16

Germany

3,8

8

Luxembourg

3,6 3,5

Austria (European model)

8

Australia

Croatia (European model)

7,9

Netherlands

Belgium (European model)

7,4

UK

2,9

Sweden (European model)

7

South Korea

2,4

Norway (European model)

6,6

Malta

2,3

• Czech Rep. (European model)

6,5

Argentina

2,3

France (European model)

6,2

Uruguay

2,1

• Hungary (European model)

5,9

Canada

• Poland

3

2

5,9

Colombia

1,6

Spain

5,7

Brazil

1,6

Denmark

5,6

Israel

1,4

Belarus

4,8

Hong Kong

Finland

4,7

Switzerland

4,4

Russia

1,1

Portugal

4,1

Saudi Arabia

1

Lithuania

4

Latvia

1

• Turkey

1,2 1,1

Ireland

3,9

Bulgaria

0,7

New Zeland

3,8

Romania

0,2

Italy

3,8

Costa Rica

0,2

(Source: http://www.irodat.org/?p=database; table prepared by authors)

56


Table 2. Worldwide kidney transplant from deceased donors 2014 (PMP) Country

PMP

Country

PMP

Spain

48,2

Ireland

24


46,7

Estonia

23,6


44,1

Brazil

22,8


43,2

Switzerland

22,7


43

Argentina

22,2

Finland (European model)

41,1

Lithuania

19,7


40,2

Germany

18,6

USA (USA model)

38,5

South Korea

16,3

Portugal (European model)

38,2

New Zealand

14,7

Canada (European model)

38,1

Kuwait

13,7

Uruguay (European model)

38

Romania

13,6

35,7

Colombia

13,5


35,7

Israel

10


34,5

Hong Kong

8,8

Malta (European model)

UK

32,8

• Turkey

8,3

Sweden

29,8

Trinidad and Tob.

7,7

• Poland

28,4

Costa Rica

7,6

Netherlands

27,9

Luxembourg

7,3

Belarus

27,9

Cyprus

6,5

Latvia

27,4

Bulgaria

6,3

Australia

27,1

Russia

5,7

26,7

Saudi Arabia

4,2

24,2

Dom. Rep.

• Slovenia Denmark

4

(Source of data: http://www.irodat.org/?p=database; table prepared by authors) Tabela 3. Worldwide liver transplant from deceased donors 2014 (PMP) Country

PMP

Country

PMP


48,2

Ireland

24


46,7

Estonia

23,6

Spain (European model)

44,1

Brazil

22,8


43,2

Switzerland

22,7

Argentina

22,2

USA (USA model)

43



41,1

Lithuania

19,7

Portugal (European model)

40,2

Germany

18,6

Italy (European model)

38,5

South Korea

16,3

Sweden (European model)

38,2

New Zealand

14,7


38,1

Kuwait

13,7

38

Romania

13,6 13,5

• Slovenia (European model) Canada

35,7

Colombia


35,7

Israel

10


34,5

Hong Kong

8,8

UK

32,8

• Turkey

8,3

Sweden

29,8

Trinidad and Tob.

7,7

28,4

Costa Rica

7,6

Netherlands

27,9

Luxembourg

7,3

Belarus

27,9

Cyprus

6,5

Latvia

27,4

Bulgaria

6,3

Australia

27,1

Russia

5,7

26,7

Saudi Arabia

4,2

24,2

Dom. Rep.

• Poland

• Slovenia Denmark

4

(Source: http://www.irodat.org/?p=database; table prepared by authors) Table 4. Worldwide deceased organ donors 2014 (PMP) Country

PMP

Country

PMP

Spain (Spanish model)

36

Denmark

13,9


35

Ireland

13,8

Malta (European model)

28,6

Argentina

13

Portugal European model)

27,7

Romania

11,2

Usa (Usa Model)

27

Germany

10,7


26,8

Lithuania

10,3


25,5

New Zealand

10,2


25,5

Iceland

9,2

Italy (European model)

23,1

South Korea

• Slovenia (European model)

9

22,8

Kuwait

8


22,6

Israel

7,7

Finland (European model)

22,1

Luxembourg

7,3

Uruguay (European model)

20,7

Colombia

7,3

57

58


Country

PMP

UK (European model)

20,4

• Hungary (European model) Belgium

20,1 17,5

Country Cyprus • Turkey Hong Kong

PMP 6,5 5,4 5,4

Sweden

17,1

Bulgaria

5,4

Netherlands

16,1

Trinidad and Tob.

3,8

16,1

Costa Rica

3,8

15,4

Saudi Arabia

3,4 3,2

Australia • Poland Latvia

15,3

Russia

Estonia

15,2

Dom. Rep.

Brazil

14,4

China

1,2

Switzerland

14,1

India

0,3

3

(Source: http://www.irodat.org/?p=database; table prepared by authors)

Conclusion Our focus activities are: • Increasing donor (DBD) rate over 30 PMP • Completing the quality and safety of the system • Improving organizational structure at the Donor Hospital level • Making more rational cooperation with Eurotransplant related to sharing of topical new information, organ allocation rules, attending the meetings in Leiden due to the lack of professionals, etc. • Cooperating as experts on EU Expert missions providing assistance to south-European countries • Upgrading the IT support for tissues and cells programme. • Cooperating with EU institutions, the Council of Europe CD-P-TO group, the Board for CETC exams, • Developing cooperation with other partners within EU projects

Tu r k e y

Organ Transplantation System in Turkey P r o f e s s o r R ü ç h a n AK AR, P h D, MD, E w a MA KUCH, MA 6

Introduction Turkey is the third most populous country in the WHO’s European Region, and its economy is among ten largest economies in Europe. It has a high growth rate and a young population. Turkey is also a candidate for membership of the European Union. Under the EU harmonization process, the Turkish health system is in transition to support a young population and a prospering economy. As part of the government’s Health Transformation Programme, institutional and organizational reforms are underway. since 2003 their main goal has been to eliminate fragmentation and duplication in health financing and delivery systems and to provide common access to health insurance and health services as well to increase the quality of health care services. Organ donation is the process of surgically removing an organ from one person (the organ donor) and placing it into another person (the recipient). Transplantation is necessary because the recipient’s organ has failed or has been damaged by a disease or injury. Organs that can be transplanted are the heart, kidneys, liver, lungs, pancreas, intestine, and thymus. Tissues include bones, tendons, cornea, skin, heart valves, and veins. Worldwide, kidneys are the most commonly transplanted organs, followed immediately by the liver and then the heart. Since 1999, the EU has had the mandate, under Article 152 of the Treaty, to legislate on quality and safety standards for human tissues and cells, human organs, and blood used in medical treatment. In order to bring organ and tissue donation services to a modern level and to do the necessary planning throughout the country, the Department of Organ and Tissue Transplantation Services and the Organ Transplantation Services Unit were established within the General Directorate of Curative Services of the Ministry of Health in Turkey. Ankara University, Faculty of Medicine, Cardiovascular Surgery Department, Organ Transplant Centre, Ankara, Turkey. 6

60


The first successful organ transplant which Live Donor Renal Transplantation occurred in Turkey in 1975. The Law on Organ and Tissue Procurement, Preservation, Grafting and Transplantation, Law No. 2238, came into effect in 1979. It regulates the procurement, preservation, grafting, and transplantation of organs and tissues for treatment, diagnostic and scientific purposes. The first successful operations in Turkey, on different organs, can be listed as: 1978 cadaveric kidney transplantation, cadaveric liver transplant in 1988, 1989 First Successful Heart Transplant, 1990 Live akin to the Partial Liver Transplantation, 1991 Heart Valve Transplant, 1998 cadaveric liver transplantation was divided into two patients. The first uterus from a cadaver was transplanted on August 9, 2011 this successful transplant is cited in world medical literature. The world’s first full face transplant was completed in Spain in 2010. But the first successful face transplant was completed in Turkey in 2012. In 2001, the “National Organ and Tissue Transplantation Coordination System” was set up under the control and coordination of the Ministry of Health. The objective of the system is to ensure that, with a fair allocation and in conformity with the scientific rules and medical ethics, organs and tissues from cadavers are delivered to the most suitable patients and coordination centres in the shortest time possible and that they are transplanted to the most suitable patients. Nine Regional Organ and Tissue Coordination Centres (RCC) were established in Adana, Ankara, Antalya, Bursa, Diyarbakir, Erzurum, Istanbul, Izmir and Samsun. In these regional centres, Organ Transplantation Coordinators consisting of doctors and nurses provide service with a fixed post system and on a 24-hours basis. Coordination of cadaver organ donations in each region is carried out by the Regional Organ and Tissue Coordination Centres under the supervision of National Organ and Tissue Coordination Centre (NCC).

Current State of Affairs in the Relevant Sector The number of patients awaiting organ transplantation in Turkey is many times more than the number of cadaver organs obtained. Consequently, the number of patients put on the national organ waiting list is increasing and some of those patients lose their lives in consequence of not finding a suitable organ for transplantation. In Turkey, as of October 2012 the number of patients on the waitlist for kidney is 20.177, for liver 1.979, for heart 352 and for lung 29. By the same period, 2.175 kidneys, 752 livers, 50 hearts, 1.108 corneas, 3 bowels and 6 pancreas transplantation performed nationwide according to the MoH statistics. In Turkey, providing organs from cadavers is 7–8 times less than EU statistics. Although Turkey has an adequate intensive care service network country wide, it fails to

Turkey. Organ Transplantation System in Turkey

61

reach the potential organ donors. In other words, 75% of follow-up patients, who have severe brain damage, in the intensive care units, dies without diagnosis of brain death. Brain death decisions are given by a council of 4 doctors; Anaesthesiologist, Neurologist, Neurosurgeon and Cardiologist. Valuable time is lost while gathering this many specialists. Due to the inadequate number of cadaver organs, the organs which are provided from live donors are transplanted to those patients. Therefore, special Commissions were established within the Provincial Health Directorates of Ministry to relieve the grievances of the patients who have voluntary live donors without any expectations of financial benefit and to assess the demands of those patients. The Ministry of Health provided new regulations in Organ Transplantation Centre’s Directives. New Organ Transplantation Centres will be opened under the control of the Ministry of Health. By these regulations, applications for new centre openings will be evaluated by the Ministry. Training Research Hospitals and University Hospitals are not within the scope of these regulations because of their activities and medical infrastructures. Foundation University Hospitals and Private Hospitals can apply to open a new Organ Transplantation Centres or open a new type of Organ transplantation Unit in the Centre under the control of the Ministry. If these Centres deemed appropriate, the Ministry allows them via prior authorization. When giving the license of Organ Transplantation Centre, one of the measures taken into account is brain death reporting and number of beds with respiratory equipment. The Ministry of Health keeps a close watch on Organ Transplantation Centres and evaluates them. A new data base system named TODS (Turkish Organ and Tissue Information System) keeps information of patients and all organ-tissue donations country wide, donor registries and monitoring information of transplantations made for both patient and donors.

The Donation Process in Turkey Anyone who is compos mentis, and above the age of 18, can donate his/her organs through the health departments, hospitals, or while applying for a driving license. The donor should fill a consent form in front of two witnesses. Bureaucratic procedures for organ donation are not as hard as it is thought, organ donation and donation certificates are issued as soon as the donors fill the forms. However, with the unexpected death of the donor, parental permission is necessary to receive a donation and that makes the process harder.

• •

Successes of Organ Transplantation System in Turkey Very effective database systems (TODS, DYOP, YOBİS, OBBS) National Coordination Centre (with 9 Regional Coordination Centres) (Figure 1, 2)

62 • • • • •


Transport system (3 planes, 17 helicopters, 2832 ambulances) Educated health care personnel who works in system 7/24 Fully equipped ICUs. Transplant Centres 119 Educated transplant teams

Organ Transplantation Legislation • • • • •

“Organ and tissue removal, storage and transplantation law about” (1979–2014) “Organ and Tissue Transplantation Services Regulation” (2000–2012) “National Coordination System and Guidelines” (2000–2008–2012) “Organ Transplant Centres Directive” (2008–2012) “Organ and Tissue Transplant Coordinator Training Directive” (2008)

Conclusions The number of patients awaiting organ transplantation in Turkey is many times more than the number of cadaver organs obtained. Consequently, the number of patients on the national organ waiting list is increasing and some of those patients lose their lives in consequence of not finding a suitable organ for the transplantation (Figure 3). In Turkey, providing organs from cadavers is 7–8 times less than EU statistics. Although Turkey has adequate intensive care service network country wide, it fails to reach the potential organ donors. In other words, 75% of follow up patients, who have severe brain damage, in the intensive care units, dies without diagnosis of brain death. Ministry of Health Directorate General of Health Services National Co-ordination Centre ANKARA 9 Regional Coordination Center (Ankara, Antalya, Istanbul, Izmir, Adana, Bursa, Diyarbakir, Erzurum, Samsun) PROVINCES (Organ Transplant Centers and Organ and Tissue Resource Centers)

Figure 1. National coordination system in Turkey (Source: https://organ.saglik.gov.tr; prepared by authors)

Turkey. Organ Transplantation System in Turkey

63

DONOR HOSPITAL • Brain Death registration • Deceased donor registration • Living Donor registration • Waiting List (All Organs) • Organ Proposal and Distribution • Matching

Tissue Typing laboratories

Brain deathdonor registration National-Regional coordination centers (UKM-BKM)

Organ Transplant Centers

Provincial Health Offices ETHICS COMMITTEE

Figure 2. Structure of the system in Turkey (Source: https://organ.saglik.gov.tr; prepared by the authors) Organ waiting Patient’s info

Donor Information Matching

Heart regional emergency regional order national emergency national rank

Liver Urgent regional order regional rank

Figure 3. Organ matching in Turkey (Source: https://organ.saglik.gov.tr; prepared by the authors)

Kidney National Emergency Regional rank National rank

Final Conclusions

Transplantation may be considered to be a measure of a country’s level of development. The successful melding of legal, ethical, medical, social, psychological, technological, economical and religious aspects is mandatory for any transplant organization. It is nearly impossible to create or run an effective system without regard for all these components. Like all similar programmes in the world, transplantation activities in the Czech Republic, Slovakia, Hungary, Poland, Slovenia and Turkey began with spectacular successful surgeries. The countries from Visegrad Group cooperate also with the other countries associate in Balttransplant, Eurotransplant and Scandiatransplant (map below). Slovenia (from 2000) and Hungary (from 2013) are the members of the Eurotransplant community (map below).

Map: Three international European organ donation asociations: Balttransplant, Eurotranspant and Scandiatransplant (Source: https//www.google.pl/search?q=Eurotransplant+countries+map&rlz)

Different societies have different attitudes toward organ donation, often based on cultural and social factors. Family refusals to donation also vary widely within Europe,

Final Conclusions

65

ranging from 6% in Portugal to 42% in the UK. The level of public awareness about organ donation, ethical issues surrounding it, variations in the legal procedures for donor consent, and different practices on organ registration and allocation, can influence public opinion on donation and transplantation, and individuals’ willingness to donate organs. For many transplant patients and their families, the situation they are in is not comfortable. For example: patients listed for heart transplant have a prolonged wait time, with continued deterioration, poor quality of life, and 10% mortality. Although recent bridge to transplant (BTT) studies demonstrated 1-year survival similar to heart transplantation, a doubt remains about the overall effectiveness as a treatment strategy compared with waiting and implanting a left ventricular device (LVAD) only as a last resort. Generally transplantation is associated with many organ–specific problems (liver, heart, kidney, skin, marrow, etc.), however there are also many common problems regarding this treatment method – regardless the type of organ. Most of them relates to psychological realms of life.

What will be the future of transplantation? It is really up to us all: healthcare personnel, engineers, psychologists, teachers, journalists, lawyers, social policy–makers, medical care, the educational system, and finally social authorities that show directions for future socio-cultural development. However, very much depends on donors and recipients (potential and factual), and their families – that is to say, their activities supporting the idea of transplantation. 1. International cooperation is crucial here with respect not only to exchange of human organs for transplantation, but also exchange of experiences, as they differ between cultures. One of the areas of cooperation is creating transnational educational programmes aimed at breaking down stereotypical thinking of life and death symptoms. Similarly, social and humanities scientists: psychologists, sociologists, cultural anthropologists, theologians, ethnologists, ethicists, lawyers and many others may play equally important role. 2. We need the educational programs addressed to specific target groups such as students, pupils and their teachers, children in preschool age in kindergarten. A restructuration of human beliefs related to two types of transplantation is also necessary. Also we need a better communication with media. Next, regular education of groups of specialists of transplantation – medical staff (doctors, nurses, psychologists, psychotherapists etc.) in cooperation with potential donor organs, recipients organs and with their families.

66


3. It is necessary for teams coordinating all transplantation activities to have regular meetings with academics whose perspective on transplantation is different from the biomedical one – it is (a) individual perspective and (b) social perspective. 4. Given the above, it is necessary that we take an interdisciplinary approach to transplantation that is in line with the biopsychosocial model. This model allows us to consider biological, psychological, sociocultural and economic factors in the preparation for the treatment of a donor, recipient and their immediate social environment as well as surgical teams involved in transplanting and harvesting organs for transplantation. 5. Given the peculiarity of transplantation – that is to say, the matching of the donor and the recipient further international collaboration is required with seminars, conferences and workshops organized not only within a big group of European organizations, but also smaller circles such as the Visegrad Group.

Second day at the conference: Přemysl Frýda (Czech Republic), Daniel Wettstein (Hungary), Ewa Makuch (Turkey), Milos Adamec (Czech Republic) and Daniel Kuba (Slovakia)) (Author: A. Obiała, UKW)

Final Conclusions

67

Third day at the Conference – Members of the Organizing Committee of the Conference: Klaudia Boniecka MA (Chair) and Alicja Szmaus-Jackowska PhD (Poland) (Author: A. Obiała)

References/sources Journal of Laws of the Ministry of Health of the 21st of July, 2010, No. 9 entry 58. Filipiak, J., Dudkiewicz, M., Czerwiński, J., Kosmala, K., Łęczycka, A., Malanowski, P. (2015). Organization and Development of Bone Marrow Donation and Transplantation in Poland. Annals of transplantation: quarterly of the Polish Transplantation Society, 20, 588–595. Matesanz R., Domıńguez-Gil B., Coll E., de la Rosa G., Marazuela R. (2011). Spanish experience as a leading country: what kind of measures were taken? Transplant International, 24, 333–343. http://www.ont.es/publicaciones/Documents/Articulos/2011/Transplant%20International-Spanish%20exp.pdf

Webography Newsletter Transplant, Grupo Aula Medica, Madrid, 2014, ISSN 21714118; http://www.ont.es/ publicaciones/Documents/NEWSLETTER%202014.pdf emmelweis.hu/english/news/2015/01/ses-department-of-transplantation-and-surgery-first-amongeuropean-institutions http://www.igeomap.pl/epowiaty/images/polska_woj.gif http://www.irodat.org/?p=database http://www.poltransplant.org.pl/ http://www.poltransplant.pl/Download/biuletyn2015 https://organ.saglik.gov.tr http://www.accord-ja.eu/content/national-transplant-organization https://www.eurotransplant.org/cms/index.php?page=et_region http://www.slovenija-transplant.si/) https//www.google.pl/search?q=Eurotransplant+countries+map&rlz

Part II

Psychological Determinants of Quality of Life of Recipients Organs and Attitudes towards Transplantation in Society

Chapter 1

The Bright and Dark Sides of Transplantology – An Example from the Patients of the Nzoz Diaverum Dialysis Station in Kościerzyna, Poland A l e k s a n d r a S z u l m a n -W a r d a l 7 , M a r i o l a B i d z a n 8

Introduction It could be said that, in recent years, Polish transplantology is experiencing both a renaissance and a crisis. The flourishing of transplantology is related to the development of increasingly excellent diagnostic methods (allowing for a quick assessment of the health of, for example, persons suffering from renal failure) and therapeutic methods (manifested in the ability to transplant various organs in an increasing number of medical facilities suitably prepared for such procedures). The crisis, on the other hand, is related to negative PR, which has led to a decrease in the number of transplants performed (of different organs) in many medical centres. This article will concentrate on a particular group of individuals – patients with renal failure, whose numbers are constantly increasing, both in Poland and the rest of the world. It is estimated that the incidence of chronic renal disease in an average population oscillates between 6 and 20%, which currently corresponds to about 600 million people in the world, and about 4.2 million people in Poland, suffering from chronic renal disease, which can lead to renal failure (Białobrzeska, Bielińska-Ogrodnik, Król 2011; Rutkowski 2007; Rutkowski 2009; Król, Rutkowski, Czarniak, Dębska-Ślizień, Jagodziński et al. 2014). Institute of Psychology, University of Gdańsk, Gdańsk, Poland; Koscierzyna Specialist Hospital Ltd, Poland. 8 Institute of Psychology, University of Gdańsk, Gdańsk, Poland. 7

Chapter 1. The Bright and Dark Sides of Transplantology – An Example from the Patients of the Nzoz…

71

Kidneys are important for, amongst other things, their excretory, hormonal and metabolic functions, and the regulation of the amount and composition of bodily fluids. They take part in the processes of transformation of systemic proteins, fats and carbohydrates (Zawadzka 2007). As stated by Czekalski (2004, 2007), chronic renal disease can be described as a multi-symptom syndrome which is the result of a decrease in the number of active nephrons, which are damaged by various pathogenic processes that take place in the renal parenchyma. One can say that chronic renal disease is an insidious condition, because in most cases it either does not produce symptoms or the symptoms are scarce. This is why affected individuals with no family history of such disease tend to be diagnosed late. They usually only end up in specialist care in the final phase of end-stage chronic kidney disease. Czekalski and Rutkowski (2006) stress that the clinical symptoms, which appear as renal functioning decreases, are also often non-characteristic. The National Consultant of Neurology guidelines state that patients should be regularly assessed for chronic renal disease risk during their routine GP check-ups. Such assessments should be made based on an interview regarding both personal and family history, socio-demographic characteristics and a blood pressure examination. The results allow a physician to assess whether an individual is in a risk group for chronic renal disease. If the results suggest the presence of risk factors, the patient shall undergo more thorough medical examinations (Czekalski, 2007). It is therefore reasonable to infer that it is extremely important to increase awareness among both physicians and the general public that diagnosing chronic renal disease, especially in its early phase, is based on simple blood and urine laboratory tests (Czekalski, Rutkowski, Chrzanowski et al. 2002, Muszyńska, Mastalerz-Migas, PokornaKałwak, Steciwko 2010).

Aetiology of chronic renal disease A number of factors leading to chronic renal disease have been identified. Among clinical factors, the most common are: • diabetes, • hypertension, • obesity and metabolic syndrome, • autoimmune diseases, • systemic infections, • urinary tract infections, • kidney stones, • lower urinary tract obstruction,

72 • • • • •

Part II. Psychological Determinants of Quality of Life of Recipients Organs and Attitudes towards…

•

malignancy, family history of chronic renal disease, acute renal failure remission, decrease in kidney mass, exposure to certain drugs (e.g. NSAIDs, chronic administration of analgesics, neurotoxic antibiotics, immunosuppressive drugs), low birth weight(< 2500 g).

• • • •

Socio-demographic factors include: age, being from an ethnic minority, exposure to certain chemical agents and environmental factors, low income/education (Czekalski 2007).

It is estimated that over 50% of cases of acute renal failure (ARF) are the result of injury or a consequence of surgery. A further 40% of cases have so-called internal causes, and the remaining 10% are due to pregnancy-related disorders. Obviously, more than one factor may lead to the development of the disease. There are also cases where it is impossible to identify the cause of acute renal failure (Kacprzyk 2006; Rutkowski, Tylicki 2004; Zdrojewski, Czekalski, Rutkowski 2001; Coe, Brenner 1999; Herold 2006).

Symptoms and stages of acute renal failure Clinical symptoms of acute renal failure include: • systemic symptoms: coma, muscle spasms, weakness; • cutaneous symptoms: itching, rash, discoloration; • cardiovascular symptoms: hypertension, pericarditis, overhydration, arrhythmia; • symptoms related to the urinary tract: oliguria, nocturia, polyuria; • muscular symptoms, such as systemic myopathy; • blood-related symptoms: anemia, purpura, hemorrhagic diathesis; • gastric symptoms: nausea, vomiting, hiccups; • neurological symptoms: muscle tremors, systemic neuropathy, • encephalopathy, seizures, coma; • respiratory symptoms: Kussmaul breathing, pulmonary edema (Kingswood, • 1999; Krumme, Böhler, 2008).

I.

The following three phases of acute renal failure are distinguished: The onset phase,


73

II. The maintenance phase, III. The recovery phase. The first phase is insidious. One of its symptoms is a decrease in the volume of urine passed, leading to oliguria (< 20 mL/h or < 400 mL /day) or anuria (< 100 mL/day) (Rutkowski, Tylicki 2004). The fact that acute renal failure may often occur with a preserved diuresis can be deceiving. Such cases may be the consequence of the use of of nephrotoxic substances, such as aminoglycosides or contrast agents. Diagnosis of the onset phase is very important, as it allows for an intervention to eliminate the causes of the syndrome. Such an intervention prevents the patient from entering the second phase of the disease. Unfortunately, the second phase will develop in most patients as no specific symptoms, except for the decreased diuresis, are observed. The maintenance phase is characterised by sustained oliguria or anuria, which lasts for 10–14 days on average, but in some cases may even last for up to 8 weeks. If the oliguria lasts for more than 8 weeks, it may lead to irreversible kidney lesions. Further consequences include acute diffuse cortical necrosis, rapidly progressive glomerulonephritis or bilateral renal artery stenosis. Oliguria leads to impaired excretion of nitrogen residues, water and electrolytes, as well as to pH imbalance. Changes occurring within the organism during ARF depend on whether diuresis is preserved and whether the patient is in a hypercatabolic state (Rutkowski, Tylicki, 2004; Stankiewicz, 2015). Hyperazotaemia is a subsequent symptom. It is characterised by central nervous system issues leading to concentration problems, somnolence or coma. The intensity of hyperazotaemia symptoms depends on the increase in serum urea, creatinine and uric acid levels. It usually concerns patients with increased catabolism and sepsis, as well as anuria (Herold 2006; Rutkowski, Tylicki 2004). Metabolic acidosis, a pH imbalance, is another symptom of ARF. Water and alkaline imbalance lead to overhydration and dilutional hyponatremia. In addition, hyperkalemia may occur in ARF, which can cause cardiac arrhythmia. It can also cause peripheral muscle weakness, numbness or even paralysis. This symptom is a sign that active treatment is needed. Hemorrhagic diathesis, which is a hematologic disorder, is another possible complication of ARF and can later lead to anaemia. In uncomplicated acute renal failure, hemorrhagic diathesis is of a primary thrombocytopenic character. One should remember that this is the result of a number of problems, and depends on the underlying illness, such as intravascular coagulation or parallel liver damage. Signs of slow recovery include a gradual increase of diuresis. At this point, a commonly accepted laboratory result defining acute renal failure has not been established. It is often defined as an increase in serum creatinine by 0.5 mg/l(44.2 mol/l) in two weeks, in the case of a baseline value of not more than 2.5 mg/l (221 mol/l); or an increase of serum creatinine

74


by more than 20%, if the baseline value was above 2.5 mg/l (22 1 mol/l). Differential diagnosis is considered to play an important role in ARF, as it allows one to attempt to establish the aetiology and phase of the disease. In case of a developed clinical picture of ARF, it needs to be assessed whether it is indeed ARF or a form of chronic renal disease. The course of the illness is difficult to evaluate and it depends on, among other things, the primary cause of kidney damage, the age of the affected individual, concomitant complications and the stage at which ARF was diagnosed. ARF fatality is estimated to be about 50%, and fatality risk factors include the disease being a consequence of multi-organ injury (50–80%). Patients for whom ARF is a complication of pregnancy and childbirth have the best prognosis (Rutkowski, Tylicki 2004). Treatment of ARF is based on the detection and elimination of the cause that may lead to prerenal or postrenal ARF. We enforce diuresis, hydrate, administer furosemide (dose between 200 and 1000 mg) and consider administration of mannitol. After this, conservative treatment is introduced, which consists of: • decreasing the administration of protein, water and electrolytes to the essential minimum; • adjusting the medication dose, based on the degree of renal failure; • dietary management according to calorie requirements; • clinical monitoring of levels of hydration, treatment of infections, and biochemical parameters – that is, daily assessment of serum urea, creatinine, sodium and potassium levels, as well as gasometry (Herold 2006; Rutkowski, Tylicki 2004).   Complete cessation of renal function leads to death. This is why end-stage renal disease requires a very costly renal replacement therapy (Pałubicka, Kaczkan, Rutkowski, Małgorzewicz 2011) – either haemodialysis or peritoneal dialysis. This method of treatment distinguishes nephrology from other branches of medicine, because repeated dialytic treatment enables the patient to live (Czekalski, Rutkowski 2006). In each phase of the disease, concomitant complications, such as infections, should also be treated (Krumme, Böhler, 2008; Rutkowski, Tylicki, 2004).  

Treatment of Chronic Kidney Disease (CKD) In previous centuries, CKD was a death sentence. The introduction of renal replacement therapy (either as haemodialysis or peritoneal dialysis), and more recently renal transplants, to the canon of medicine has dramatically improved the situation of CKD sufferers. Medical progress in this area has saved the lives of many patients. Myśliwiec, Rutkowski, Wańkowicz and Durlik (2006) report that the first haemodialysis in Poland took place in 1958. At the beginning it was a very exclusive procedure,


75

limited by many stipulations. Presently, there are no such limitations with regards to this treatment. Any patient who requires such therapy will receive it. In fact, dialysis stations are located all over Poland in such a way that any patient in need of dialysis lives at most 60 km from a location where they can receive treatment. The treatment goals of the two main types of dialysis (haemodialysis and peritoneal dialysis) are very similar – the method was developed to substitute for several kidney functions. Treatment must ensure the elimination of harmful metabolic byproducts and excess water from the organism, leading to the normalisation of concentrations of electrolytes and other substances. A semipermeable membrane, vascular access allowing for blood collection, dialysis fluid and the ability to eliminate excess water are necessary to perform an effective dialysis.

Haemodialysis Haemodialysis purifies the patient’s body through therapeutic procedures conducted externally. In this type of treatment, blood goes through a filter (dialyzer) that is connected to an artificial kidney. This procedure usually takes 4–5 hours and must be performed at least three times a week. Metabolism by-products and water are eliminated from the body by the dialyzer. Thin capillaries made of semipermeable membranes are the main element of this device. The membranes function as barriers separating blood and dialysis fluid, selectively allowing certain substances to pass through, to and from the blood. Two sterile plastic drains are attached to the dialyser – one transporting blood collected from blood vessels to the dialyser, and the other transporting the filtered blood back to the body of the patient. Bloodlines and the dialyzer (the extracorporeal circuit) are connected to a device referred to as the artificial kidney machine. This device controls safe blood flow through the extracorporeal circuit, usually at the speed of 250–450 mL/min. Total blood volume in the circuit is about 200–300 mL (Steciwko, Mastalerz-Migas, Muszyńska 2006). Haemodialysis comes with the risk of certain complications. The most common is hypotonia, which occurs during 20–30% of such procedures. It develops as the result of a rapid or excessive decrease in the circulating blood volume, leading to insufficient filling of the heart. This lowers the cardiac output and causes hypotension. Other complications of haemodialysis include: muscle spasms (affecting about 5–20% of patients), nausea and vomiting (5–15%), headaches (5%), chest pain (2–5%), back pain (2–5%), itching 1%, shivers and increased body temperature (in less than 1% of patients)(Sherman, Daugirdas, Ing 2008).

76


Peritoneal dialysis This method of renal replacement therapy uses the patient’s own peritoneal membrane as an internal dialyser. There are many factors which might lead one to depend on peritoneal dialysis (PD). Before this treatment is prescribed, it is necessary to choose between continuous ambulatory peritoneal dialysis (CAPD) and automated peritoneal dialysis (APD). The pros of the first approach include its simplicity, low cost and the fact that it doesn’t require any devices. Historically speaking, it is the most popular form of PD. The need to conduct repeated exchanges of dialytic fluid (4 times a day) is a drawback of CAPD. The second type of PD, APD, has gained in popularity in developed countries in recent years. This method is also referred to as continuous cycling peritoneal dialysis (CCPD), a method in which the patient is connected to a machine called an automated cycler (usually at night), which can be further subdivided into types where the patient does and does not carry dialysate in their peritoneum throughout the day. The advantage of CCPD is the ability to continue treatment without the need to exchange dialysate bags multiple times throughout the day. Its high cost is the main drawback. Clinical studies suggest that there are practically no differences between the two subtypes of CCPD, and the subtype in which the patient does not carry dialysate in their peritoneum throughout the day makes it possible to use it in patients with residual renal function (Blake, 2008). There are many groups in which this form of dialysis is the perfect solution. Including: • children, especially those under 5 years old; • patients older than 65; • persons with no vascular access for haemodialysis; • persons with a history of cardiovascular diseases; • individuals diagnosed with diabetes; • patients who cannot use haemodialysis due to complications; • patients who are reluctant towards the machine and being dependent on it; • patients living far away from a haemodialysis centre; • very active individuals; • those at high risk of contracting a blood-transmitted disease; • other reasons, e.g. related to a patient’s daytime schedule. Many clinicians highlight the advantages of the peritoneal dialysis programme. Such advantages include: • a more stable internal environment, especially important for children, patients with a history of cardiovascular diseases, and the elderly;


• •

77

• •

more effective glycaemic and vascular control in the case of diabetic patients; practically no circulatory complications (no risk of dialysis disequilibrium syndrome); slower left ventricular hypertrophy and less cardiovascular stress; longer preservation of residual renal function (liberal diet and administration of liquids); better control over the anaemia secondary to the renal disease; more effective food intake for children.

• • •

The drawbacks of peritoneal dialysis include: it’s not a long-term solution; low effectiveness in patients with anuria or high muscle mass; high frequency of technical complications and infections (Wańkowicz 2013).

• •

Renal transplant   The advance of renal replacement therapy methods and the increase in the accessibility of such treatments have led to changes in patients’ adaptation to life, and its new integral part – treatment in chronic dialysis programmes. The essence of transplantation is the transfer of a kidney from one individual (the donor) to the body of the receiver (the patient suffering from renal failure). A transplant can come from a cadaver or a living donor (Rutkowski 2007). In the context of the above described methods, transplantation is the best option. The first kidney transplant (taken from a cadaver) in Poland took place in Wrocław in 1965. In 2003 the number of people in Poland living with a renal transplant was 6008 (Stompór et al. 2005; Zawadzka, 2007). Research shows that renal transplants lead to an increase of quality of life and improves the patient’s prognosis. Therefore every patient suffering from CKD should be assessed for eligibility for a renal transplant. Individuals on the national renal transplant waiting list list are usually already treated by repeated dialyses, but one can also register before initiating dialyses (pre-emptive transplantation). This applies mainly to children and people over 50, patients with diabetic nephropathy and a creatinine clearance rate under 15 mL/min/1.73 m2. To qualify for a renal transplant one cannot have any contraindications, otherwise the immunosuppressive treatment may cause complications, or even lead to the patient’s death. Absolute contraindications include: • HIV infection; • illness with a prognosis of less than 2 years; • general malignancy;

78 • • •


refractory heart failure (pulmonary heart disease, nonoperative heart defect); the patient lacking discipline (possibly due to addiction or mental illness); general artherosclerosis with irreversble lesions (Krumme, Böhler 2008; DębskaŚlizeń, Rowińska 2004).

Patients may also be characterised by relative contraindications that temporarily disqualify them from getting a transplant. In most cases such patients can be re-registered to the national renal transplant waiting list once the contraindications have been remedied. When discussing issues related to renal transplants, it is worth mentioning the postsurgery risks. One is the threat of recurrence of the underlying illness. Lesions characteristic of primary glomerulonephritis or systemic renal failure may appear in the transplanted kidney. Transplant rejection is another serious threat. Currently, people who have already undergone one transplant surgery constitute an increasing percentage of individuals registered on the transplant waiting list. (Dębska-Ślizeń, Rowińska 2004).

Research materials The research material includes information gathered over many years through psychological interviews with dialysis patients in Kościerzyna, Poland9. The table below shows the number of patients dialysed in each year in the institution. Table 1. Individuals dialysed between 1998 and 2015 in the Dialysis Station in Kościerzyna (in the Kościerzyna Specialist Hospital and later the “Diaverum” Dialysis Station) Years

Number of dialysed individuals

1998–2002

no data available

2003

41

2004

47

2005

53

2006

49

2007

49

2008

57

2009

59

2010

63

It should be noted that between 1998 and 2011, dialyses took place in a public hospital, and after 2011 the restructuring of the hospital and budget cuts led to the introduction of an external, private company, specialising in nephrology (NZOZ Stacja Dializ Diaverum w Kościerzynie). 9


2011

62

2012

57

2013

64

2014

62

2015

58

79

Psychological interventions for chronically ill patients, which included psychological interviews, yielded a list of bright and dark sides of dialysis-based therapy. Patients attempted to subjectively assess the gains and losses associated with the haemodialysis process. We managed to group patients’ statements regarding their specific experiences. Psychologists (N = 7), as so-called competent judges, qualified these statements as pros and cons of haemodialysis. Table 2. The bright and dark sides of heamodialysis, as assessed by the patients from the Kościerzyna (Poland) dialysis station Bright

Dark

• It replaces the inactive kidneys (saves patients’ lives), though in an imperfect way. • It may be acute (in sudden, but reversible states –the function of kidneys returns). • It may be chronic – meaning treatment for the rest of one’s life (may end in a transplant!). • Patient receives special and comprehensive medical care (biochemical tests, physical examinations, monitoring of all health parameters, consultations with specialists, pharmacotherapy)

• The work of artificial kidney is unnaturally accelerated – what would normally take place in 48 hours, needs to happen in 5 – which has side effects. • Patients complain about “post-dialytic hangover” (mucosal dryness, pains and dizziness, general fatigue etc.) • The pain associated with dialysis (e.g. creating the vascular access, and also the frequent reparatory surgeries, insertions into the fistula, injections, bone pains associated with calcium-phosphate disturbances, muscle spasms, hypotonia, and temporary loss of consciousness). • Aggravation of atherosclerosis (risk of limb amputation). • More frequent hospitalisations in comparison to other chronically ill patients • Frequent infections. • Dietary restrictions. • Extreme restriction of fluid intake • Infertility. • Issues concerning sexuality.

Additional “dark sides” mentioned by our respondents are associated with the psychosocial sphere, including: • varying levels of adaptation to the problem (reactions to sudden or progressive loss of capacity), • varying attitudes towards entering into the process of dialysis (similar to the above), • being in denial about the illness (running away from the problem), • becoming passive due to the illness (an attitude of “I am seriously ill – this frees me from any responsibility”),

80 • • • • • • •


“absence during dialysis” (cutting away from the “here and now”), infantile behaviour (entering regression mechanisms, requiring medical personnel to treat the patient like a child), problems resulting from changes to the central nervous system (especially those of a cognitive nature), loss of freedom associated with the time required for dialysis (which takes 4–5 hours, every second day), the need to commute to the procedure (stations can be up to 60 km from the patient, commuting and preparation for the dialysis is a high time-cost for the patients), being forced to repeatedly spend time in the same company during the dialyses (being bound by the dialysis schedule system), which may lead to conflicts, problems with family relations (adjusting the schedule of family life to the fixed schedule of dialyses).

An attentive and critical reader who carefully looks at both sides of table 2 as well as the list presented below the table could conclude that, quantitatively, there are clearly more disadvantages to haemodialysis than there are advantages. However, one cannot rely on a simple, quantitative analysis. It is necessary to put emphasis on the quality. The key argument that outweighs all others is life. Every single patient has indicated this ‘profit’. Hence, one would suppose that a great majority of the patients whose lives are sustained by the complex process of haemodialysis would endeavour to increase their quality of life by undergoing a transplant – to go back to most perfect, natural kidney function – restoring their excretory, endocrine and metabolic functions. However, the data presented below clearly indicate that only a small number of patients treated in this dialysis station underwent transplants. Table 3. P eople who underwent transplants throughout the entire period of the dialysis station’s functioning Year

Number of individuals who underwent transplantation

1998

1

1999

0

2000

3

2001

2

2002

4

2003

4

2004

7

2005

3


• • • •

• •

2006

5

2007

4

2008

3

2009

4

2010

2

2011

1

2012

0

2013

2

2014

5

2015

2

81

Respondents indicate more cons than pros of transplantation: risk of death, immunity is decreased by the post-operative, immunosuppressive treatment necessary to prevent rejection, initial isolation from the outside environment, the side-effects of medication, other than decreased immunity (steroids may cause many complications including diabetes, obesity, increased risk of bone fractures, skin lesions, and electrolyte imbalance; immunosuppressive drugs may also cause hair loss or hirsutism), the transplanted kidney may fail to work, maintaining the need for dialyses, transplanted kidneys usually only work for several to over a dozen years

Discussion From the psychological point of view, it is worth thinking about the reasons why patients have such perceptions about this ‘ideal’ way of treatment. The diagnosis of a chronic illness may itself can cause a great deal of stress. Most patients affected with CKD assess this situation in terms of a threat (Bishop 2000). Also the adjustment to the role of a patient is a source of great stress, as people with CKD are expected to remain relatively emotionally balanced in a situation that provides reasons for one to experience fear, anxiety, depression, and a sense of helplesness or anger (Basińska, Waraksa-Wiśniewska, Andruszkiewicz 2014). An individual suffering from CKD, as with other chronically ill patients, is exposed to many psychosocial stressors. These include: • the illness itself;

82 • • • • • • • •


the associated treatment (especially in the case of dialysis, patients perceive the medical intervention as unpleasant, and something they have no control over); fear of death; fears of a socio-economic nature; every-day life limitations, also related to emotional difficulties with fulfilling medical recommendations; problems with sexual intercourse;   dietary restrictions; marital conflicts; tense interpersonal relations within one’s family (Cohen, Holder-Perkins, Kimmel, 2008; Bargiel-Matusiewicz 2014).

The lot of renal replacement therapy patients is particularly difficult, because practically every patient (even those who are well-educated and prepared for the therapy) experiences high levels of stress when undergoing their first dialyses (Basińska et al., 2014). The awareness of the permanent loss of one’s health and independence, as well as the need to entrust one’s life to an apparatus and medical personnel has a lasting impact on one’s self-image, and perception of one’s situation that is so dramatically changed by the illness (Sapilak, Kurpas, Karczmarek, Steciwko 2006). The advance of medicine in the area of CKD treatment, and in dealing with the end-stages of the disease, has led to increased chances of prolonging patients’ lives, in some cases by many years. However dialyses do not allow for a full substitution of renal function, and they have many sideeffects. This is why in the course of using haemodialyses, as time passess, there is a slow and systematic deterioration in the patient’s health and psycho-physical condition (Harciarek, Biedunkiewicz, Lichodziejewska-Niemierko, Dębska-Ślizień, Rutkowski 2009; Harciarek, Williamson, Biedunkiewicz, Lichodziejewska-Niemierko, Dębska-Ślizień, Rutkowski 2010; Bargiel-Matusiewicz 2014). Anxiety is the most common psychological problem among patients with CKD (McDade-Montez, Christensen, Cvengros, Lawton 2006), but they also experience changes in self-perception, fear of burdening one’s family memberes (Witorzeńć 1992), a sense of loss in many areas of life (especially one’s career and social status, but also in their family life) (Bargiel-Matusiewicz, Sobota, Wilczyńska 2010) and depression. Depression leads to problems complying with the dialysis schedule, taking medication, and even to a risk of suicide. It is believed that depression may be underdiagnosed in this group, and so it’s often untreated. Its prevalence is estimated at 10–50% of dialysis patients (Cohen, Holder-Perkins, Kimmel 2008). A study by Witorzeńć (1992) revealed that 57% of dialysis patients consider discontinuation of treatment due to depressed mood. More recent studies (e.g. McDade-Montez et al. 2006) suggest that in the period of 4 years from the onset of depression symptoms, 18% patients resigned from dialyses, which, according to some researchers, may be treated


83

as a form of suicide. Hovever, not all authors agree with such an interpretation (MakaraStudzińska, Książek, Załuska, Kaim, Książek, Morylowska 2007). Despite an agreement that depressive disorders are the most common type of disorders among dialysis patients, many researchers stress that some patients had suffered from anxiety and depression before the initiation of treatment. Therefore it is probably a result of the stress associated with the illness itself, which is widely regarded as serious and untreatable, and not just a reaction to dialyses. The correct diagnosis of depression in CKD patients may be more difficult due to a lack of suitable screening tools, the similarity between some somatic symptoms of CKD to symptoms of depression, and insufficient training of medical personnel in terms of recognising depression symptoms (Bargiel-Matusiewicz 2014). The participation in renal replacement therapy is itself a source of anxiety in every third person – patients find it hard to foresee how will they feel after the procedure. They often expect negative changes, and, most importantly, they are powerless with regards to such changes and find them hard to deal with (Bargiel-Matusiewicz 2014). This may mean that many patients focus on the disadvantages of dialysis i.e. their cognitive assessment of the dialysis therapy situation is dominated by perceived threat and loss, and they tend not to view the situation as a challenge or a gain. While this form of therapy saves patients’ lives, especially in end-stage CKD, the patients increasingly focus on the disadvantages associated with this form of treatment as time passes (BargielMatusiewicz 2014).

Summary Dialysis patients experience constant stress. On one hand their lives depend on regular dialysis procedures, on the other hand this procedure impairs their daily functioning (e.g. makes it impossible for them to work). This leads to the loss of control over many aspects of one’s life – including one’s social position, which takes a toll on the emotional state of CKD patients. In turn, this further negatively influences their physical condition, and increases the chances of complications during the procedure. One of the reasons that patients who receive this form of therapy are hesitant to accept transplants lies in issues in communication between nephrologists and transplantologists. Patients who receive a transplant are no longer treated by nephrologists. Because of this, there is no information flow between patients – and it is well known that in vivo exemplification can be the best trigger mechanism for action. In some cases nephrologists protect their patients with ‘envy’, as managing a chronically ill patient requiring peritoneal dialysis has large economic benefits.

84


From our point of view, it would be advisable to extend the psycho-educational process, such that it would debunk all the myths associated with transplantology. Here, while based on clinical psychology, it would be worth applying concepts from social psychology, in particular – the idea of stereotypes. The more reliable information that a patient receives, the calmer their emotions will be, and their behaviour will be more rational and balanced. Everything should serve to increase the patient’s quality of life and their health and well-being. Taking into account the severity of the symptoms and the chronic character of the illness, it is important to encourage behaviours that promote health in this group of individuals, which may lead to an improvement of their health and better functioning in many aspects of life (Stankiewicz 2015).

Bibliography Bargiel-Matusiewicz, K. (2014). Przewlekły stres związany z dializoterapią. Zastosowanie interwencji psychologicznych. Warszawa: Wyd. Uniwersytetu Warszawskiego. Bargiel-Matusiewicz, K., Sobota A., Wilczyńska, A. (2010). Self-evaluation in dialysis patients. Europen Journal of Medical Research, 15(4), Suplement 2, 7–9. Basińska, M.A., Waraksa-Wiśniewska, M., Andruszkiewicz, A. (2014). Nastrój jako wyznacznik akceptacji choroby pacjentów dializowanych. Nefrologia i Dializoterapia Polska, 18(1), 27–31. Białobrzeska, B., Bielińska-Ogrodnik, D., Król, E. (2011). Gdański model edukacji pacjentów z przewlekłą chorobą nerek, Forum Nefrologiczne 4(1), 58–67. Bishop, G. (2000). Psychologia zdrowia. Wrocław: Wyd. Astrum. Blake, P.G. (2008). Adekwatność dializy otrzewnowej oraz zalecenia dotyczące wykonania przewlekłej dializy otrzewnowej. [In:] Daugirdas, J.W. (ed.). Podręcznik dializoterapii. (pp. 246–247). Lublin: Wydawnictwo Czelej. Coe, F.L., Brenner, B.M. (1999). Zaburzenia funkcji nerek. [In:] Kasper, D.L., Braunwald, E., Hauser, S., Jameson, J.L., Fauci, A.S., Loscalzo, J., Longo, D.L. (ed.). Interna Harrisona, t. 3. Lublin: Wydawnictwo Czelej, 2599. Cohen, S.D., Holder-Perkins, V., Kimmel, P.L. (2008). Zagadnienia psychosocjologiczne występujące u pacjentów w schyłkowym stadium przewlekłej niewydolności nerek. [In:] Daugirdas, J.W. (ed.). Podręcznik dializoterapii (pp. 293–297). Lublin: Wydawnictwo Czelej. Czekalski S. (2004). Przewlekła niewydolność nerek (stadia progresji przewlekłej choroby nerek) (pp. 186–221). [In:] Książek A, Rutkowski B. (ed.), Nefrologia. Lublin: Wydawnictwo Czelej. Czekalski, S. (2007). Przewlekła choroba nerek – przewlekła niewydolność nerek w Polsce i na świecie. Przewodnik Lekarza, 1, 10–16. Czekalski, S., Rutkowski, B. (2006). The history of nephrology in Poland. Journal of Nephrology 19 (Suppl 10), S150-8. Czekalski, S., Rutkowski, B., Chrzanowski, W. et al. (2002). Zalecenia Zespołu Krajowego Konsultanta Medycznego w Dziedzinie Nefrologii dotyczące postępowania zachowawczego u chorych z przewlekłą niewydolnooecią nerek. Nefrologia i Dializoterapia Polska 6 (4), 197–02.


85

Dębska-Ślizeń, A., Rowińska, D. (2004). Przygotowania pacjenta z przewlekłą niewydolnością nerek do przeszczepienia nerki. [In:] Rutkowski, B. (ed.). Dializoterapia w praktyce lekarskiej (pp. 595–610). Gdańsk: Wyd. Artur Matys. MAKmedia. Harciarek, M., Biedunkiewicz, B., Lichodziejewska-Niemierko, M., Dębska-Ślizień, A., Rutkowski, B. (2009). Continuous cognitive improvement 1 year following successful kidney transplant. Kidney International, 79 (12), 1353–1360. Harciarek, M., Williamson, J.B., Biedunkiewicz, B., Lichodziejewska-Niemierko, M., DębskaŚlizień, A., & Rutkowski, B. (2010). Memory performance in adequately dialyzed patients with end-stage renal disease: is there an association with coronary artery bypass grafting?. Journal of Clinical and Experimental Neuropsychology, 32(8), 881–889. Herold, G. (2006). Medycyna wewnętrzna (pp. 747–752). Warszawa: Wyd. Lekarskie PZWL. Kacprzyk, F. (2006). Podstawy nefrologii. [In:] Latkowski, B., Lukas, W. (ed). Medycyna rodzinna, część II (pp. 427–428). Warszawa: Wydawnictwo Lekarskie PZWL Kingswood, J.C. (1999). Choroby nerek. [In:] Axford, J. (ed.). Choroby wewnętrzne (pp. 370–371). T. 2. Wrocław: Wyd. Med. Urban & Partner. Król, Rutkowski, Czarniak, Dębska-Ślizień, Jagodziński, Korejwo, Krawczyk, Lizakowski, Szcześniak, Zdrojewski (2014). Przewlekła choroba nerek wyzwaniem nefrologii XXI wieku. Wkład gdańskiej szkoły nefrologii. Nefrologia i Dializoterapia Polska, 18 (4), 153–156. Krumme, B., Böhler, J. (2008). Akutes Nierenversagen. [In:] Kuhlmann, U. (ed.). Nephrologie (pp. 381–405). Stuttgart: Verlag Thieme. Makara-Studzińska, M., Książek, P., Załuska, W., Kaim, R., Książek, A., Morylowska, J. (2007). Rozpowszechnienie objawów depresyjnych u pacjentów ze schyłkową niewydolnością nerek – przegląd literatury. Postępy Psychiatrii i Neurologii, 16 (1), 57–61. McDade-Montez, E.A., Christensen, A.J., Cvengros, J.A., Lawton, W.J. (2006). The role of depression symptoms in dialysis withdrawal. Health Psychology, 25(2), 198–204. Muszyńska, A., Mastalerz-Migas, A., Pokorna-Kałwak, D., Steciwko, A. (2010). Wczesne wykrywanie przewlekłej choroby nerek w praktyce lekarza rodzinnego, Przewodnik Lekarza 2, 70–73. Myśliwiec, M., Rutkowski, B., Wańkowicz, Z., Durlik, M. (2006). Niewydolność nerek [In:] A. Szczyklik (ed.). Choroby wewnętrzne T. 2. Kraków: Wyd. MP. Pałubicka, K., Kaczkan, M., Rutkowski, B., Małgorzewicz (2011). Edukacja żywieniowa pacjentów z przewlekłą chorobą nerek w trakcie leczenia zachowawczego. Forum Nefrologiczne 4 (4), 306. Rutkowski B. (2009). Aktualne problemy niewydolności nerek. Forum Nefrologiczne 2 (1), 45–49. Rutkowski B. (2007). Przewlekła choroba nerek (PChN) – wyzwanie XXI wieku. Przewodnik Lekarski, 94(2), 80–87. Rutkowski, B., Tylicki, L. (2004). Ostra niewydolność nerek. [In:]. Rutkowski, B. (ed.). Dializoterapia w praktyce lekarskiej (pp. 35–55). Gdańsk: Wyd. Med. Makmed. Sapilak, B., Kurpas, D., Karczmarek, M., Steciwko, A. (2006). Formy wsparcia psychoterapeutycznego dla pacjenta dializowanego i jego rodziny. Problemy Lekarskie, 45(3), 97–98. Sherman, R.A., Daugirdas, J.T., Ing, T.S. (2008). Powikłania występujące w przypadku nerkozastępczego leczenia hemodializami. [In:] Daugirdas, J. W.(ed.). Podręcznik dializoterapii (pp. 109–125). Lublin: Wydawnictwo Czelej. Stankiewicz, A. (2015). Predyktory zachowań prozdrowotnych u osób dializowanych z przewlekłą chorobą nerek. Niepublikowana praca doktorska. Gdańsk: Instytut Psychologii UG.

86


Steciwko, A., Mastalerz-Migas, A., Muszyńska, A. (2006). Przewlekła choroba nerek – profilaktyka i hamowanie progresji, Terapia, 9 (1), 81–85. Stompór, T., Rajzer, M., Kawecka-Jaszcz, K., Dembińska-Kieć, A., Janda, K., Wójcik, K., Tabor, B., Zdzienicka, A., Janusz-Grzybowska, E., Sułowicz W. (2005). Renal transplantation ameliorates the progression of arterial stiffness in patients treated with peritoneal dialysis. Peritoneal Dialysis International, 25, 492–496. Wańkowicz, Z. (2013). Dializa – wczoraj i dziś, przez pryzmat własnych doświadczeń. Nefrologia i Dializoterapia Polska, 17(2), 65–71. Witorzeńć, I. (1992). Aspekty psychiatryczne leczenia powtarzanymi dializami. [Psychiatric aspects of repeated dialysis treatment]. Psychiatria Polska, 26(1–2), 110–114. Zawadzka, B. (2007). Psychologiczne problemy chorych nefrologicznie. [In:] B. BętkowskaKorpała, B., Gierowski J.K. (ed.). Psychologia lekarska w leczeniu chorych somatycznie. Podręcznik dla studentów medycyny i lekarzy (pp. 101–117). Kraków: Wyd. Uniwersytetu Jagiellońskiego. Zdrojewski, Z., Czekalski, S., Rutkowski, B. (2001). Rozpoznanie i leczenie ostrej niewydolności nerek (pp. 166–185). [In:] Rutkowski, B., Czekalski, S. (ed.). Standardy postępowania w rozpoznaniu i leczeniu chorób nerek Gdańsk:Wyd. Med. Makmed.

Chapter 2

Quality of Life and Acceptance of Illness among Patients with Ventricular Assist Device Implementation and after Heart Transplantation K la u d i a B o n i e c k a 1 0 , E w a M a k u c h 1 1 ,E v r e n Ö z ç ı n a r 12 , H a n n a L i b e r s k a 1 3 , A. R ü ç h a n A k a r 1 4

Abstract Background Ventricular assist device (VAD) implementation is a widely used method of end-stage heart failure treatment commonly known as a bridge to transplantation, while the heart transplantation itself is a surgical transplant procedure performed on patients with endstage heart failure or severe coronary artery disease.

Aim In this study we measured the acceptance of an illness and quality of life among Turkish patients with VADs and after heart transplantation. 10 Department of Social Psychology and Studies on Adolescents, Institute of Psychology, Kazimierz Wielki University, Bydgoszcz, Poland. 11 Ankara University, Faculty of Medicine, Cardiovascular Surgery Department, Organ Transplant Centre, Ankara, Turkey. 12 Ankara University, Faculty of Medicine, Cardiovascular Surgery Department, Organ Transplant Centre, Ankara, Turkey. 13 Department of Social Psychology and Studies on Adolescents, Institute of Psychology, Kazimierz Wielki University, Bydgoszcz, Poland. 14 Ankara University, Faculty of Medicine, Cardiovascular Surgery Department, Organ Transplant Centre, Ankara, Turkey.

88


Methods We analysed the data from a study of heart transplant patients (n = 9) between 28 and 63 years old and VAD patients (n = 7) between 33 and 56 years old. The study was conducted at the Ankara University Department of Cardiovascular Surgery in the beginning of 2015. The patients were asked to fill in two questionnaires-EQ-5D for quality of life and Acceptance of Illness (AIS), they were informed about the procedure and they agreed to take part in the study.

Results The average AIS level among VAD patients was 32 points whether the average AIS level among heart transplant patients was 26. It has been found that more patients with the implanted VADs show a higher level of acceptance of the disease than those after heart transplantation. The patients with implemented ventricular assist device showed better adaptation to the disease and lower mental discomfort caused by their medical condition.

Conclusıons Further research on the acceptance of illness in people with LVAD and after heart transplantation is necessary because of the huge role of the acceptance of the chronic disease as well as the awareness of the disease play in the healing process. At the same time measurement of these variables allows patients to exercise self-control and adherence to medical prescription which significantly affects the patient’s life extension. Key words: heart transplant, ventricular assist device, quality of life, acceptance of illness

Introduction Progress in medical science allows successful treatment of serious diseases. One of the means that medicine offers for permanent treatment of unrecoverable heart failure is the left ventricular assist devices (LVADs). LVADs are durable mechanical circulatory support (MCS) devices that can prolong patient survival but also alter end-of-life trajectory commonly named as a bridge to transplantation (Rady, 2014). Heart transplantation is a surgical transplant procedure performed on patients with end-stage heart failure or severe coronary artery disease (Park, 2012). After nearly 50 years of clinical development, durable mechanical circulatory support (MCS) devices are widely available for patients with advanced heart failure (Stewart, Givertz, 2012). The first heart transplantation was performed in South Africa by Christiaan Bernard in 1967.

Chapter 2. Quality of Life and Acceptance of Illness among Patients with Ventricular Assist Device…

89

In order for VAD and heart transplantation treatments to be effective, patients lifestyle has to be changed. Chronic disease and organ transplantation undoubtedly affect the functioning of man in all aspects of his/her life (Mapelli at all, 2014). Disease acceptance plays great importance in process of accommodation for chronic disease (Chodkiewicz, 2004). The acceptance of the illness is a crucial factor for patients with end stage illness which – as many research data have shown – may influence also their quality of life and other psycho-social functioning behaviours (Ogińska-Bulik, Juczyński, 2010, Liberska, 2011, Guck, Kinney, Anazia, Williams, 2012, Heszen, Sęk, 2015). Acceptance of illness is – according to many doctors and psychologists – a necessary condition of effective therapy. The lack of acceptance leads to disregard of doctor’s orders search for help at dubious sources (internet, healers) or denial of the sense of treatment (Chodkiewicz, 2004, Juczyński, Adamiak, 2000); Acceptance in human psychology is a person’s assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it or protest. The level of acceptance of the illness has an important effect on the adaptation to the limitations imposed by the illness, dependence on others and evaluation of the patient’s own worth 5. The aforementioned determinants affect the subjective perception of QoL and SwL and determine the level of the patient’s own activity (Van Damme-Ostapowicz, 2014). Any disease evokes negative emotions, difficulties and imposes limitations on or forces changes in performing social functions (Kułak, Kondzior, 2011). Specialist literature emphasises that that the higher the level of illness acceptance, the better the patients adaptation and the less intensive emotions they feel, which affects their evaluation of the quality of life (Das, Ravindran, 2011). Very important is the subjective evaluation of one’s life situation and psychophysical condition, influenced by assessment of one’s resources and limitations and the resources and limitations of the environment, including the available social support, technical, medical and psychological help (Sęk, Cieślak, 2012). The subjective evaluation is influenced by the structure of need, the hierarchy of values and the sense of worth of life (Heszen, Sęk, 2015). Quality of life is understood to be both subjective and multidimensional. Because it is subjective, it is best measured from the patient’s perspective. Because it is multidimensional, its measurement requires the investigator to inquire about a range of areas of the patient’s life, including physical well-being, functional ability, emotional well-being, and social well-being (Liberska, Łukowska, 2011). The usual concern for symptom control, familiar to the palliative-care physician, can conceptually be expanded into a consideration of costs and benefits of various treatment options relative to their subjective perception of personal function and well-being (Cella, 1994).

90


The cardiovascular diseases – the global problem Cardiovascular diseases are the leading cause of death globally. Together they resulted in 17.3 million deaths (31.5%) in 2013 and this number is growing at frightening pace. Diseases of the cardiovascular system are the leading cause of death and hospitalization in Poland and Turkey. Due to the enormous scale of this problem, as well as its social and economic consequences, conditions associated with atherosclerosis pose the biggest challenge for health promotion. Heart failure is a major public health problem, with a patient population of at least 10 million in Europe and approximately 5 million in North America. Because of its age-dependent increase in incidence and prevalence, heart failure is one of the leading causes of death and hospitalization among the elderly (see: Goodlin, Rich, 2015)..As a consequence of the worldwide increase in life expectancy, and due to improvements in the treatment of heart failure in recent years, the proportion of patients that reach an advanced phase of the disease, so-called end stage, refractory or terminal heart failure, is steadily growing. Despite significant progress in the treatment, the prognosis for this disease it is very unfavourable, because in an advanced stage of heart failure, the annual mortality exceeds 50%. The availability of heart transplantation for patients who could benefit from the procedure is limited by the continuing shortage of donor hearts and the increasing number of transplant candidates. Our own research shows that there are no significant differences between Turkish and Polish societies regarding the attitudes toward organ donation. Both groups are indicating positive attitudes toward organ donation, however the organ donation rate is still very low in both countries. In 2014 in Poland donor rate was 13%, while in Turkey this number is very low – 5.6%. In Poland 2014 only 76 heart transplant procedures were performed while in Turkey this number was 7815. But in 2015 in Poland were 99 heart transplant procedures16. Currently 552 patients are enrolled on the heart waiting list in Turkey. In Poland the waiting list is 343, so it is long and often the waiting patient dies before a donor is found. Heart transplantation is often the only possible treatment, although other options are available. One of such methods is implementation of ventricular assist devices which allow patients to survive. VADs are designed to assist either the right (RVAD) or left (LVAD) ventricle, or both at once (BiVAD). Long term VADs are normally used to keep patients alive with a good quality of life while they wait for a heart transplantation (known as a “bridge to transplantation”). However, LVADs are sometimes used as destination therapy, meaning that the patients are not intended to undergo heart transplant,

15 16

http://www.poltransplant.org.pl/statystyka_2014.html. http://www.poltransplant.org.pl/statystyka_2015.html.


91

and sometimes as a bridge to recovery only. As can be supposed in the near future, the number of patients with inserted LVADs will greatly exceed the number of people after heart transplantation because of the lack of organs. The awareness that the number of organs for donation is insufficient can negatively affect the patients wellbeing. From our research it was found that both in Polish and Turkish societies trust in health care system is a very important factor which influence the decision of person about possibility of donating their organs (Kazakhstan) (Makuch et al., 2015). Making this decision depends to a high degree on certain personal features including the level of emotional intelligence. Today, fast and reliable ICT tools used widely in the world became an important component of efficient and effective health management systems. TRAN-VAD-MED project plans to offer a better quality of life for both LVAD patients and post heart transplant patients by means of ICT technologies. Neither in Poland nor in Turkey such kind of home-care monitoring system allowing monitoring of health conditions of the patients and collecting integrated health and psychological records, is provided to this group of patients. Recently, much interest among the transplantologists has been devoted to the idea of organisation of the system for monitoring of the somatic and psychological condition of patients after transplantation and after LVAD implementation in natural life situation (e.g. family house). Such monitoring opens the possibility of rapid response when need arises. The efforts are currently made to organise and install the systems of continuous monitoring, data storage and data analyses, which would need the cooperation of doctors, nurses, psychologists and computer scientists. AIM The main aim of this study was to analyse the level of acceptance of an illness (AIS) and quality of life (QLQ) among patients with implanted VADs and patients after heart transplantation.

Materials and method We analysed the data from a study of 9 heart transplantation patients between 28 and 63 years old and 7 VAD patients between 33 and 56 years old. The study was conducted at the Ankara University Department of Cardiovascular Surgery in the beginning of 2015 and by a psychologist. In our study we used Acceptance of Illness (AIS) scale and EQ-5D Quality of Life questionnaire. The AIS (Acceptance of Illness Scale) is applied to measure the degree of acceptance of an illness. It consists of 8 statements that describe negative consequences of health conditions. The participants are asked to express their feeling by marking on each statement a number from 1 to 5, where 1 denotes ‘strongly agree’ and 5 ‘strongly

92


disagree’. The higher the score,, the better the patient accepts his/her illness and adapts more suitable to the illness with lower feeling of psychological discomfort. The highest score in AIS is 40 and the lowest score a person can receive in AIS is 8. The AIS has satisfactory psychometric properties (Basińska, Andruszkiewicz, 2012). EQ-5D is a standardised instrument created by the EuroQol Group as a measure of health condition and has satisfactory psychometric properties (Jelsma, Maart, 2015). EQ-5D is a descriptive system of health related quality of life states consisting of 5 dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression each of which can take one of three responses reflecting severity (no problems/some or moderate problems/extreme problems)

Results At first we analysed the level of acceptance of the disease in the studied groups. Comparison of the average of results shows that the patients with VAD are characterized by a higher level of acceptance of the disease. The average AIS level among VAD patients was 32 points while the average AIS level among heart transplant patients was 26 (Fig. 1) The acceptation of illness (sum of points) 35 30 25 20 15 10 5 0

TX

LVAD

Fig. 1. The average level of acceptance of illness – comparison between the groups-AIS (Prepared by authors)

It has been found that more patients with implemented LVAD show a higher level of acceptance of the disease than those after heart transplantation. Later we analysed the quality of life of patients with LVADs and post-transplant patients.


The degree of acceptance

40 35 32 30

30

34

32

30

28

26

25

36

35 32

29

28

93

28

27

19

20

16

15 10 5 0

Patients with:

VAD

TX

Fig. 2. The degree of acceptance of the disease in patients after transplantation and with implanted LVAD (Prepared by authors)

The group of patients with LVADs declared higher subjective assessment of self-care than the patients after transplantation (Fig 4). However, in two categories of EQ-5D, the LVADs patients were associated with lower quality of life. These categories were perceived pain and level of anxiety (Fig.6, Fig.7). In one category-mobility – no differences between the groups were indicated (Fig.3). However, subjective level of activity assessment was perceived as worse by the group of posttransplant patients (Fig.5). 3,5

Level of mobility

3

3

3 2,5 2

2 2

2 2

2

2

2

2

1,5 1

1 1

1 1

1

1

0,5 0

Patients

VAD

TX

Fig. 3. The results related to the perceived quality of mobility among patients after transplantation and with implemented LVAD (Prepared by authors)

94

Part II. Psychological Determinants of Quality of Life of Recipients Organs and Attitudes towards… 3,5

3

Level of self-care

3 2,5 2

22

3

3

2

22

1,5

1

1

3 2

2 11

1

1

0,5 0 VAD

Patients with LVAD and after transplanation

TX

Fig. 4. The results related to the perceived quality of self-care among patients after transplantation and with implemented LVAD

Very bad quality

(Prepared by authors) 6 5

5

4

4 3

Very good quality

3 2

2

4

4 3

3 2

2 11

1

1

11

1

0 Patients with LVAD (7 persons) and after transplantation TX (9 persons)

TX

VAD

Fig. 5. The results related to the perceived quality of activity among patients after transplantation TX and with implemented LVAD (Prepared by authors) 3,5 The severity of pain

3

3

3

3

3

2,5 2

2

2

2

2

1,5 1

1

1

1

1

1

11

1

0,5 0

Patients with:

VAD

TX

Fig. 6. The results related to the perceived quality of pain among patients after transplantation and with implemented LVAD (Prepared by authors)


95

2

2

2

2

2

2

1,5 1

1 1

1

1

1

1 1

1

1

1

1

Low

Degree of anxiety High

2,5

0,5 0

Patients with:

VAD

TX

Fig. 7. The results related to the perceived quality of anxiety among patients after transplantation and with implemented LVAD (Prepared by authors)

Subjective health assessment

The high level of anxiety in the patients with LVADs can be related to the fact that they live with a device which their life depends on. That might be the reason why their anxiety level is higher. More LVADs patients report pain. On the question of how are you feeling today patients with LVADs were having significantly higher scores than those after heart transplantation. The answer is an indicator of subjective assessment of quality of life at this moment. Subjective health assessment of patients after LVADs is higher than those after transplantation (fig. 8) which is very important because many studies have shown that the subjective assessment is a better predictor of health and is more important than the treatment of medical variables. It is necessary to monitor patients to measure quality of life EQ-5D because it allows detection of changes in the level of quality of life among patients with chronic disease, which is significant for perceived somatic health status. 100 90 80 70 60 50 40 30 20 10 0 Patients with: LVAD (VAD) and after transplanation (TX)

VAD

TX

Fig. 8. The evaluation of own health by patients after transplantation (TX) and with LVAD (VAD) (Prepared by authors)

96


Disscusion Currently cardiovascular diseases are on the top among the most common life-threatening diseases. Medical science is developing more and more lifesaving treatments for patients with heart-failure diseases. Chronic disease has impact on all areas of lives of the patient, forces lifestyle changes, and may result in a reduction in the quality of life. Although it is commonly realised, there are not many reports on comparative studies on psychological condition and social situation of patients with LVAD and after the heart transplantation. For this reason in our study we focused on analysis of medical and psychological variables in the above mentioned groups of patients. Acceptance of illness means to agree to the difficulties or constraints which have to be faced due to the illness. We were interested in the level of illness acceptance treated as an indicator of adaptation to new conditions of functioning and the level of psychological discomfort in patients after heart transplantation and after LVAD implementation. It is assumed that the greater acceptance of the illness, the better adapted the patients and weaker the feeling of psychological discomfort they have. Our results suggest that the patients with implemented LVAD show a higher level of adaptation to the disease and lower mental discomfort caused by the medical condition. AIS tool examines the sense of dependence on other people or different aspects of physical disability. Patients with LVADs indicate fewer problems with physical and psychosocial functioning on a daily basis, which is associated with a less complicated procedure of LVADs implementation compared with the heart transplant operation. A recovery process itself is much shorter, and even less burdensome for patients with LVADs than to those after heart transplantation. Hospitalization after heart transplantation and implementation of LVADS take approximately 1 month, minimum 3 weeks and maximum 2 months, however the patients who received new hearts are staying longer in hospital because of the adjustment process. This difference in the length of stay in hospital does cause more stress and constraints in the functioning of the psycho-physical and social realms to the patients after heart transplantation. The better results of the patients with VADs in the acceptance of illness and quality of life may signal that patients with LVADs are in denial. Their own heart illness may seem still better in comparison with the serious life threatening surgery of transplantation. The majority of patients with implemented LVADs seem to be in a good condition and they do not want to have a heart transplant surgery. According to the results, there is a correlation between the acceptance of illness and the subjective level of quality of life of patients.


97

When it comes to subjective assessment of quality of life it is linked to the general state of health and adherence. Contrary to the claims of many professionals, in our own studies not in all categories of respondents this dependence was found. There was a relationship between the higher level of acceptance of the disease and the higher quality of life. Patients with implanted LVAD were characterized by a higher level of activity than transplant patients. Transplant patients reported more problems than patients with LVADs:. This means that patients with implanted LVAD more favourably evaluated their quality of life when it comes to relations, daily work activities, leisure activities and spending free time with family.

Conclusions Further research on the acceptance of illness in people with LVAD and after heart transplantation is necessary because of the huge role of the acceptance of the disease in chronic diseases and the awareness of the disease play in the healing process. At the same time measurement of these variables allows the patients to exercise self-control and adherence to medical prescription, which significantly affects the patient’s life extension.

Bibliography Basińska M., Andruszkiewicz A. (2012). Health Locus of Control in Patients With Graves-Basedow Disease and Hashimoto Disease and Their Acceptance of Illness. Int. J. Endocrinol. Metab., 10 (3), 537–542. Cella D.F. (1994). Quality of life: concepts and definition. J. Pain Symptom Manage, 9 (3),186–192. Chodkiewicz J. (2004). Problem akceptacjı choroby u osob uzaleznıonych od alkoholu. Znaczenıe zasobow osobıstych. ACTA UNIVERSITATIS LODZIENSIS Folia Psychologica, 8, 123–133. Das A., Ravindran T.S. (2011). Factors affecting treatment-seeking for febrile illness in a malaria endemic block in Boudh district, Orissa, India: policy implications for malaria control. Malar J, 9, 377. 7. Goodlin S.J., Rich M.W. (eds.) (2015). End-of-life Care in Cardiovascular Disease. London, Heidelberg, New York, Dordrecht: Springer Guck T.P., Kinney M., Anazia G., Williams M.A. (2012). Relationship Between Acceptance of Illness and Functional Outcomes Following Cardiac Rehabilitation. Journal of Cardiopulmonary Rehabilitation & Prevention, Vol. 32, 4. 187–191. Heszen I., Sęk H. (2015). Psychologia zdrowia. Warszawa: Wydawnictwo Naukowe PWN. Jelsma J., Maart S. (2015). Should additional domains be added to the EQ-5D health-related quality of life instrument for community-based studies? An analytical descriptive study. Population Health Metrics, 13, 13.

98


Juczyński Z., Adamiak G. (2000). Psychologiczne i behawioralne wyznaczniki jakości życia chorych ze stwardnieniem rozsianym. Polski Merkuriusz Lekarski, 8, 48, 413–415. Kułak W, Kondzior D (2011). Acceptance of chronic low back pain in actively working patients. Prog Health Sci, 11, 1, 81–88. Liberska H. (2011). Choroba dziecka jako stresor dla systemu rodziny. Wykład wygłoszony podczas III Ogólnopolskiej Konferencji Naukowej Psychologia w służbie rodziny. Zdrowotne aspekty życia rodzinnego. Gdańsk, 17–19.05.2011. Liberska H., Łukowska K. (2011). Mental well-being – models and determinants. [In:] H.Liberska (ed.).Current Psychosocial Problems in Traditional and Novel Approaches (19–38). Bydgoszcz: Wydawnictwo Uniwersytetu Kazimierza Wielkiego. Makuch E., Boniecka K., Aygör B., Özçinar E., Liberska H., Akar A.R. (2015). Analysis of trust to health care professionals, emotional intelligence, knowledge and attitudes towards organ donation within Polish and Turkish societies. Poster presented at I-th Congress of The Turkic World Transplantation Society, Astana, Kazacstan, 20 – 2.05.2015. Mapelli D., Cavazzana A., Cavalli Ch., Bottio T., Tarzia V., Gerosa G., Volpe B.R. (2014). Clinical psychological and neuropsychological issues with left ventricular assist devices (LVADs). Ann Cardiothorac Surg. 3 (5), 480–498. (http://www.ncbi.nlm.nih.gov/pmc/articles/ PMC4229472/) Ogińska-Bulik N., Juczyński Z. (2010). Rozwój potraumatyczny – charakterystyka i pomiar. Psychiatria, 7, 129–142. Park J.S, Milano A.C.,Tatooles J.A.,Rogers G.J.Adamson M.R., Steidley D.E., Ewald A.G., Sundareswaran S.K., Farrar J.D., Slaughter S.M. (2012). Outcomes in Advanced Heart Failure Patients With Left Ventricular Assist Devices for Destination Therapy. Circulation Heart Failure. January, 26;5, 241–248. Rady Y.M. (2014). Ethical Challenges With Deactivation of Durable Mechanical Circulatory Support at the End of Life Left Ventricular Assist Devices and Total Artificial Hearts. Journal of Intensive Care Medicine, 29 no. 1, 3–12. Sęk H., Cieślak R. (red.) (2012). Wsparcie społeczne, stres i zdrowie. Warszawa: Wydawnictwo Naukowe PWN. Stewart C.G.,Givertz M.M. (2012). Mechanical Circulatory Support for Advanced Heart Failure Patients and Technology in Evolution. Circulation, 125, 1304–1315. Van Damme-Ostapowicz K., Krajewska-Kułak E., Nwosu P.J.C., Kułak W., Sobolewski M., Olszański R. (2014). Acceptance of illness and satisfaction with life among malaria patients in rivers state, Nigeria. BMC Health Services Research,14, 202.

Chapter 3

Attitudes Towards Transplantation – Is It Possible to Change them? H a n n a L i b e r s k a 17

Introduction The notion of attitude is fundamental in social psychology. It is made of three components: cognitive (the knowledge of the subject of a given attitude), emotional (emotions related to the subject of attitude) and behavioural (the action of a given person towards the subject of attitude). According to some researchers, the attitude is a relatively permanent tendency towards positive or negative evaluation of the subject of attitude (Wojciszke, 2011), while others reduce this notion to the emotions towards a given subject (Kenrick, Neuberg, Cialdini, 2006). According to another definition given by Aronson the attitude is a permanent emotion felt towards a given subject or object or a set of believes referring to a given subject or object (Aronson, Wilson, Akert, 1999). The evaluation of the subject of attitude can be manifested by the type of emotion aroused by this subject (Wojciszke, 2011) or by endowing it with a certain value in the life of an individual. Attitudes regulate the behaviour of people towards different subjects or objects and influence the way of perception, evaluation and actions taken towards this subject/object. The attitudes can be located on the continuum of evaluation, from extremely negative to extremely positive. This location informs about the sign (positive or negative) and strength or intensity of emotions related to a given subject of attitude.

Department of Social Psychology and Studies on Adolescents, Institute of Psychology, Kazimierz Wielki University, Bydgoszcz, Poland. 17

100


Features of attitudes The attitudes can be described by the sign (positive or negative), strength or intensity, stability, degree of completeness (complete or incomplete), degree of consistence with other attitudes or inner consistence and the importance of attitude. The importance of attitude is implied by its relation to the central structure of the psyche which is self. It is also related to the agreement with the hierarchy of values of a given individual – the higher on the scale of hierarchy of values is the subject of the attitude – the more important it is to this individual. According to some studies, in regulation of man’s behaviour the emotions precede the knowledge. People tend to assume a certain attitude towards a given subject earlier than learning about it (Duckworth et al. 2002). The ability to immediately assume an attitude towards another man, object or phenomenon helps quick response to it, so it probably has had adaptive significance, increasing the chances of survival. Assumption of an attitude precedes the attack or escape, ignoring of a subject or attempt to contact it. According to R.Fazio (2007, after Wojciszke, 2011) the attitude is made by association of a given object (its image or knowledge about it) with its evaluation, stored in memory, so it has been produced as an outcome of the individual experiences with this subject or object of attitude. Especially important for development of an attitude towards a certain subject or object is the first experience related to it. The attitude to a given subject or object can follow from the first associations with it or from the evaluation of the subject or object made on the basis of earlier contacts with it. The associations are formed automatically and the individual may not realise it, so he or she does not know why a given subject or object arouses his or her negative or positive emotions. That is why they are called latent attitudes. The evaluations are a result of thinking processes and the individual is aware of them. They are called overt or declarative. They can be measured by the overt declarations set on a few degree scales. For instance, someone says “I think that my grandmother is honest” and we ask him or her to place the evaluation on the scale from 1 corresponding to the statement “I fully disagree” to 5 corresponding to “I fully agree”. It is also possible to use the scale of semantic differential, e.g. “I think that my grandmother is: 1. Very ugly

2. Very beautiful


101

The attitudes can be investigated by observation of individual’s behaviour towards the subject or object of attitude. In this way it is possible to investigate both latent and overt attitudes (IAT or Implicit Attitude Test) (Greenwald, McGhee, Schwarzt, 1998).

The attitude can develop in three ways 1. It can be related to the emotions of an individual towards the subject/ object of the attitude. In this case the fundamental mechanism responsible for the association is the evaluative conditioning. If any subject/object initially neutral towards the individual, appears before any other object evaluated as positive or appears during the latter presence in the perception field of the individual, than this individual forms a positive attitude towards this initially neutral object. The same mechanism is responsible for the formation of negative attitudes (Walther, 2002; Fazio, 2007, after: Wojciszke, 2011). The mechanism of evaluative conditioning can be used for inducing a change in attitude from negative to positive or vice versa. The participation of emotions is also important in the mechanism of instrumental conditioning. If taking up an activity leads to obtaining the benefits known from earlier experience, this initially neutral activity starts stirring positive emotions, and vice versa. As follows from the above, the physiological background of attitudes are conditioned response. Thus the attitudes appear in the process of learning. 2. The attitude can also follow from the believes of the individual about the subject/ object of attitude. For instance a person can believe that giving an organ (e.g. a kidney) to another person makes this person obliged to thank and support the donor in different ways. 3. The attitude can develop as a result of taking up certain activities by the individual towards the subject/ object of attitude. Certain activities can be deliberate but certain others can be forced (e.g. by a superior, under threat of punishment).

Possibilities of changing attitudes Although attitudes are assigned with relative stability, their change is possible. It is even possible to change the sign of the attitude, while less important is the change in its intensity. What are the factors influencing the effectiveness of actions aimed at changes in attitude? Three groups of factors are analysed: (1) features of the persuading person (emitter), (2) features of the listener, (3) features of the persuading communicate (transmission) (Fig. 1).

102


Selected strategy (central or peripheral) – persuasive situation

Features of the persuading person Attractiveness

Competence

Personal engagment

Content of communication

Organization of persuasion

Means of the persuading communicate (MEDIUM)

Features of the listener Sex

Age

Personal engagement

Others

Fig. 1. Determinants of the effectiveness of persuasion aimed at change in attitude (Author’s own materials, H. Liberska, 2015)

Problem of the study Two questions were asked: 1. What are the attitudes of young adult Poles towards transplantation? 2. Is it possible to change the attitudes of young adults towards transplantation? Which persuasive activity aimed at change in the attitude of young adults towards transplantation is the most effective if the change is aimed at a) the sign of the attitude (from negative to positive) b) intensity of the negative attitude (reduction of the strength of the negative attitude) c) intensity of the positive attitude (increase in the strength of the positive attitude). On the basis of literature, the experimental study was designed. The participants were 90 young adults, aged 20–30. The effectiveness of the peripheral strategy that was given the status of the independent variable X, was tested. Let me remind you that the peripheral strategy is to prepare the persuading communication with no important arguments or facts but is based on the features of the persuading person that is his/ her attractiveness and reliability. The use of this strategy is recommended if the communicate receivers are not interested in the matter, that is in


103

the content of the communication). The lack of interest can follow from a low position of the attitude in the hierarchy of attitudes so from little importance of a given attitude. Little interest in the content of the communicate can also follow from the psychophysical condition (e.g. tiredness, illness, hunger and other causes). It can also be related to the features of the situation in which the communication is transmitted (conditions in which it is difficult to concentrate, noise, too low or too high temperature, beauty of the hostesses, etc.). In contrast, the central strategy is concentrated on the content of the persuasive communication, choice of right arguments that should change the sign or strength of a given attitude. This strategy is used when the receivers of the communicate are interested in the matter and able to concentrate. The communicate should contain important information and should be logical. In the experiment we tested the effectiveness of the peripheral strategy. The most important were the features of the persuading persons, (1) the reliability and (2) attractiveness and (3) strong personal engagement of the persuading person in the subject matter.

The course of experiment The experiment was realised in three stages A,B and C. Stage A. Determination of the attitudes towards transplantation. Stage B. The use of peripheral strategy was realised in three subgroups, denoted I, II and III. a. In subgroup I the reliability of the persuading person was the main feature. The person was introduced as a 40 years old surgeon specialist in transplantology with over 10 years of experience, so as a reliable and competent person knowing the problem from the medical viewpoint and interested in the problem for professional reasons. He was asked to show little emotions while delivering the communicate (the way of speaking, facial expression, body movements). b. In subgroup II the main feature was the attractiveness of the persuading person. The person was a young, 20 + years old woman, introduced as a professional model presenting clothing at fashion shows in Paris and Roma. She was asked to show moderate emotions during presentation of the communicate. c. In subgroup III the persuading person was introduced as a 30 year old wife of a man waiting for heart transplantation and a mother of 2 children. The person was introduced as vitally interested in the problem. She was asked to show strong emotions during presentation of the communicate.

104


All persuading persons presented the same communication but with different level of emotions. Stage C. Repeated determination of attitudes towards transplantation. The first determination was made one hour before entering the room in which the communication was to be presented, while the second determination – two hours after the presentation.

Tools of study For determination of attitudes we used the questionnaire that apart from the questions on the subject allowed getting the data on the sex, age, education, place of living, professional status (employed, unemployed, pensioner). One of the questions was about (a) being a donor or recipient of an organ and another one was about the presence of a donor or recipient of an organ in the family or among friends. The sign and strength of the attitude towards transplantation was measured by a scale SPWT prepared by author. It is a short list of 8 items: “To which degree do you agree with the opinions given below?” 1. Transplantation of an organ is sometimes the only effective method of saving human life and health. 2. Transplantation of organs is not consistent with the system of my believes. 3. The human body is too valuable to resign from using its parts after death for saving the life of another person/ persons. 4. If a person close to me needed an organ and I satisfied the conditions to be a donor, I would agree to be a donor (e.g. a kidney, marrow). 5. I am willing to agree for taking my organs after my clinical death to donate them to other persons unknown to me. 6. The organs for transplantation should be paid for to the donors or their families. 7. I approve of transplantations of different organs except for the heart. 8. Only such operations are acceptable which do not cause irreversible damage in the organism of the donor, e.g. blood transfusion and marrow transplantation. The persons taking part in the experiment responded to the above opinions marking their answers on a five point Likert scale: I fully agree (5), I rather agree (4), I partly agree and partly disagree (3), I rather do not agree (2) I fully do not agree (1). With this tool it was possible to get the total score from the range 8 – 40. It was assumed that the score from the range 8–20 indicates a generally negative attitude towards transplantation, while the score from 21 to 40 – a generally positive attitude towards transplantation (Table 10).


105

The analysis was made assuming that: The score 8–12 indicates a strong negative attitude; The score 13–20 indicates a moderate negative attitude; The score 21–35 indicates a moderate positive attitude; The score 36–40 indicates a strong positive attitude. [The total score of 8 indicates extremely negative attitude, while the total score 40 indicates extremely positive attitude] Table 1. Total score obtained in the SPWT questionnaire Total score

Sign of attitude

Strength of attitude

8–12

negative/minus

Strongly negative

13–20

negative/minus

Moderately negative

21–35

positive/plus

Moderately positive

36–40

positive/plus

Strongly positive

Results of stage A On the basis of the results marked on the SPWT scale it was found that the majority of respondents had positive attitude towards transplantation (89%). The negative attitude was revealed in 11% of respondents (Table 2). In particular, 62 persons declared a moderate positive attitude, 18 persons declared strong positive attitude, 3 persons declared strong negative (extremely strong) attitude and 7 moderately negative attitude. In view of such results the respondents were not divided into subgroups according to the sign of the attitude although we had originally planned it. Table 2. Frequency of different attitudes towards transplantation in the group studied Total score 8–12 13–20 21–35 36–40

Sign of attitude (plus; minus) negative

positive

Strength of attitude

Number of respondents (total = 90)

Strong

3

Moderate

7

Moderate

62

Strong

18

Number of persons in subgroup

Percent

10

11%

80

89%

% 3% 8% 69% 20%

In the second stage of the experiment (B), the respondents were divided into three subgroups of 30 persons. The selection to the groups was random, although the ratio of persons representing negative attitudes to those representing positive attitudes was maintained in each group (1:8). Each subgroup was addressed by a different person delivering

106


the persuading communicate. After delivery of the communications of the same content by three different presenters, the respondents were asked to fill in the questionnaire SPWT scale. The results obtained before and after the communicate were compared. (For some scales used reverse coding.)

Results obtained after the second (B) and third (C) stage of study The data on the sign and strength of attitudes towards transplantation collected before and after the exposure to the same persuading communicate (presented by three persons to three groups of respondents), are given in Table 3. Table 3. Comparison of the results on the signs and strength of attitudes to transplantation collected before and after exposure to the persuading communicate. Communication deliverer

Mean intensity of negative attitude before exposure to communication

Mean intensity of negative attitude after exposure to communication

Mean intensity of positive attitude before exposure to communication

Mean intensity of positive attitude after exposure to communication

Reliable person/expert

14,33

17

30,63

31,78

Attractive person

14,75

15,50

30,19

31,08

Engaged person

14,67

17,67

30,30

32,04

(The higher the mean – the more positive attitude)

According to the data presented in Table 3, in all groups the sign and strength of attitudes changed as a result of exposure to the persuading communication. a. As far the negative attitudes are concerned, the results revealed: • the change in sign to positive (about 30% of evaluations) • weakening of the strength of negative attitudes (on average by 2,14); the change was the smallest in the group exposed to the attractive deliverer and the greatest in the group of engaged deliverer (a wife of man in need of transplantation). b. As far as the positive attitudes are concerned, the results revealed their increase in all subgroups (on average by 1,26); the change was the smallest in the group exposed to the attractive deliverer and the greatest in the group exposed to the engaged deliverer. As follows from the above results, the most effective in inducing changes in attitudes, both negative and positive, was the delivery by the woman personally engaged in the problem, less effective was the communication by the reliable and competent deliverer and the least effective was the communication delivered by a physically attractive person.


107

Statistical analysis has revealed a significant dependence of the changes in intensity of negative attitudes on the act of persuasion (χ2 = 12,124 > χα2 = 10,872, α = 0.001, d = 1). Statistical analysis has also revealed a significant dependence of the changes in the number of persons presenting positive attitudes toward transplantation on the features of the deliverer of the act of communication: we observe the increase of the number of people with more positive attitudes (intensity) (χ2 = 9,04 > χα2 = 7,824, α = 0.02, d = 2).

Conclusions The possibility of changes in the attitudes towards transplantation in young adults was experimentally tested. In the test the peripheral strategy was applied and the features of the deliverer of persuading communication were manipulated. The person delivering the same communication to the three study subgroups had different features; reliability/ competence, physical attractiveness or personal engagement. The most effective was the delivery by the personally engaged deliverer. According to instructions given to her and as expected from the person who had to deal with life threatening condition of a family member, the personally engaged deliverer showed the strongest emotions. In view of the above it cannot be excluded that her effectiveness followed from the reasons given below. 1. The fact that the listeners were convinced about her great experience and deep knowledge of the subject she was talking about, presumably higher than that of the competent surgeon specialist in transplantology. 2. An important role of emotions and the process of evaluative conditioning in developing an attitude. Evaluative conditioning is based on “direct shaping of emotional attitude to a given subject/ object, which can be accompanied by the ensuing change in the believes on this subject/ object” (Wojciszke, 2011, s.206). If a given subject or object are little known to the listeners of the communication, the emotions concerning this subject/ object are induced in the listeners prior to the cognitive processes leading to intellectual understanding of the subject or object. 3. The transmission of signals informing about the suffering of the deliverer to arouse sympathy and then a more positive attitude to the deliverer. As a further consequence, the listener can adapt the point of view of the deliverer and so consistently with the persuading contents. The result is in agreement with the results reported by van T’Riet and co-workers (2010, after: Wojciszke, 2011, p. 221). They confirmed the hypothesis of the key importance of emotions aroused by the communication referring to the loss and gain. In our experiment, the emotions were aroused in the listeners by the information presented by the wife about the loss suffered by her family and about further loss if no

108


transplantation is performed. In our experiment the message was nonverbal (facial expression, voice modulation, body movement). The negative emotions instilled in the listeners in combination with the acceptance of the verbal communication, emphasising the health and psychosocial benefits following from successful transplantation, effectively change the attitude towards the subject in the direction implied by the intentions of the deliverer. According to the results of many authors, the peripheral strategy leads to short-time changes in attitudes (see Aronson, Wilson, Akert, 1999). In order to check the stability of changes obtained, the attitudes towards transplantation should be measured again after some longer time of a month or half a year (see Brzeziński, 2015). Such measurements, planned to be repeated in 3 months, will make the fourth stage of our study. To sum up, the current results concerning the possibility of shaping and changing the attitudes towards transplantation are promising.

Bibliography Aronson E., Wilson T.D., Akert R.M. (1999). Postawy i zmiana postaw. Oddziaływania na myśli i uczucia. In: Psychologia społeczna (s. 178–207). Poznań: Wydawnictwo Zysk i S-ka. Brzeziński J. (2015). Metodologia badań psychologicznych. Warszawa: Wydawnictwo Naukowe PWN. Duckworth K.L., Bargh J.A., Garcia M., Chaiken S. (2002). The automatic evaluation of novel stimuli. Psychological Science, 13, 513–519. Walther E. (2002). Guilty by mere association: Evaluative conditioning and the spreading attitude effect. Journal of Personality and Social Psychology, 82, 919–934. Greenwald A.G., McGhee D.E., Schwartz J.K.L. (1998). Measuring individual differences in social conditions: the Implicit Associations Test. Journal of Personality and Social Psychology, 74, 1464–1480. Wojciszke B. (2011). Psychologia społeczna. Warszawa: Wydawnictwo Naukowe SCHOLAR.

Chapter 4

Attitudes toward Organ Transplantation and Locus of Control among Young Adults A l i c j a S z m a u s - J a ck o w s k a 1 8

Introduction Organ transplantation is the moving of an organ from one body to another or from a donor site to another location on the person’s own body in order to replace the recipient’s damaged or absent organ. Organs that can be transplanted are the heart, kidneys, liver, lungs, pancreas, intestine, and thymus. Tissues include bones, tendons (both referred to as musculoskeletal grafts), cornea, skin, heart valves, nerves and veins. Worldwide, the kidneys are the most commonly transplanted organs, followed by the liver and heart respectively. Cornea and musculoskeletal grafts are the most commonly transplanted tissues; these outnumber organ transplants by more than tenfold (Ejere, Okanya, 2013). Organ donors may be living, brain dead, or dead via circulatory death. Tissue may be recovered from donors who die of circulatory death, as well as of brain death – up to 24 hours past the cessation of heartbeat. Unlike organs, most tissues (with the exception of corneas) can be preserved and stored for up to five years, meaning they can be “banked”. Transplantation raises a number of bioethical issues, including the definition of death, when and how consent should be given for an organ to be transplanted, and payment for organs intended for transplantation. Other ethical issues include transplantation tourism and more broadly the socio–economic context in which organ procurement or transplantation may occur. Organ transplant is a highly efficacious therapeutic alternative, which is restricted by the need to obtain donation. Organ generation through donation is a complex process involving many technical and organizational factors. However, its final result depends

Department of Social Psychology and Studies on Adolescents, Institute of Psychology, Kazimierz Wielki University, Bydgoszcz, Poland. 18

110


closely on the final decision of people who are unrelated to the health system. This means that part of the efforts in the field of research and intervention on transplant should also be aimed at factors affecting personal decisions in this matter. Organ transplantation is an effective therapy for end–stage organ failure and is widely practiced around the world. Organ failure is a devastating and yet common medical condition. It involves the failure of one or more essential organs or systems of the body, causing significant disabilities or even death. Organ failure can be a chronic problem requiring long–term treatment, resulting in long–term suffering of the patient and his family members, as well as the burden associated high costs of treatment. On the other hand, it can be a relatively acute problem, with a rapid deterioration of health leading to patients’ death within a few weeks. The common types of organ failure are kidney, liver and heart failures. For cornea, most medical authorities consider it a tissue and the reason for transplant is usually cornea opacity due to physical injuries, and not tissue “failure”. The purpose of medical treatment is to provide “replacement therapy” – treatment that replaces the lost functions of the organ or system. To date, the only successful experience in providing replacement therapy is kidney dialysis. The other attempts to manage liver (e.g. liver dialysis) and heart failures (e.g. left ventricular assist device; heart reconstruction surgery) have not produced very good results. Very often, these patients die relatively quickly even with therapy, unlike kidney failure patients who can live with dialysis for many years (Chern, 2008). According to the World Health Organization (WHO), kidney transplants are carried out in 91 countries. Around 66,000 kidney transplants, 21,000 liver transplants and 6,000 heart transplants were performed globally in 2005. Patients’ access to organ transplantation, however, varies according to their national situations, and is partly determined by the cost of health care, the level of technical capacity and, most importantly, the availability of organs (World Health Organization, 2007). The shortage of human organs is virtually a universal problem. In some countries, the development of a deceased organ donation programme is hampered by sociocultural, legal and other factors. Even in developed countries, where rates of deceased organ donation tend to be higher than in other countries, organs from this source fail to meet the increasing demand. The use of live donors for kidney and liver transplantation is also practiced, but the purchase and sale of transplant organs from live donors are prohibited in many countries (Shimazono, 2007). Therefore, we must find a way to get the greatest number of people to give voluntary consent for organ donation after their and their loved one’s death. Organ transplantation is currently the best and very often the only alternative for people suffering from organ failure. There are many dilemmas among people awaiting transplantation and potential donors. Consequently, a prolonged waiting time for the organ transplantation results in a relapse in the patient’s condition and very often leads to


111

their death. Therefore, it is very important to abolish some negative stereotypes concerning transplantology (Ścisło, Partyka, 2013). Organ transplant is almost commonly approved in Poland. Attitudes toward organ transplantation have been checked since 1994, and back then already eight out of ten adults (83%) supported organ transplantation from deceased donors. In 2011 this number was 96%. Unfortunately, by the unknown reason, the practice of transplantation is not as common as it could be. On the one hand, it can result from the imperfections of medical procedures or hospital’s organization, on the other hand there is still a problem with families disagreement about organ retrieval. It is true that it has no legal force, but in practice physicians waive the removal of organs in this situation. The Poltransplant report shows that in the years 2006–2011 each year, roughly one in ten of the potential donors was excluded because of a lack of authorization, resulting from the family’s or the public prosecutor’s objection, or the donor’s own reservations. Diverse factors may condition peoples’ disposition to donate. Some people are afraid of giving consent for organ donation because they do not know when death is coming, they have emotional problems connected with the death of a loved one. Other people have religious beliefs that are in contradiction with organ donation and transplantation practices, do not trust medical personnel, still others fear their organs will be used in an unfair manner (Kośmider-Cichomska, 2002). Studies of social attitudes toward transplantation are extremely useful, because they show the social aspect of transplantation: attitudes toward organ donation, why people refuse retrieval of organs for transplantation from a dead body and whether they really know the relatives and family members’ opinions concerning organ donation. The issue of personal reasons concerning reluctance toward organ donation and transplantation still remains open Negative or positive attitudes regarding organ donation may be caused by different personality factors, e.g. high/low level of empathy (the capacity to understand or feel what another human bein is experiencing from within the other being’s frame of reference, the capacity to place oneself in another’s position), willingness to help other people, sensitivity etc., but negative attitudes can be also analyzed as a result of external locus of control. The author’s research is an attempt to recognize some important issues associated with social attitudes toward organ donation and transplantation.

Aim of the study The aim of the study was to determine attitude, knowledge and personality determinants of the organ transplantation in the population of young adults. The aim of the study was to check whether attitudes toward organ transplantation are caused by the external or internal locus of control. The purpose of the analyses was to obtain answers to the following two questions:

112


1. What are the attitudes toward organ transplantation among young adults? 2. Are attitudes toward organ transplantation caused by locus of control? Based on relevant literature and studies to date, factors (external or internal locus of control) impacting on attitudes toward organ transplantation have been chosen and the following hypotheses have been formulated: H1: Young adults support organ transplantation. H2: Young adults with external locus of control have more negative attitudes toward organ transplantation than young adults with internal locus of control.

Sample group and research procedure: The sample group included 30 randomly selected young people. There were 20 women and 10 men with an average of 21 years in the study group. All participants were in education. Most of them (85%) were educated to a high school level. Over two-thirds (75%) identified themselves as Christians, the rest of them declared to be of no religion or that they were atheists (25%). The study was conducted in October 2015. The participants were given a questionnaire including a manual and a request form to be filled and handed back in a given period of time. The young respondents had their anonymity assured and all were informed of a purely scientific character of the research. Incomplete questionnaires were excluded from the study.

Research tools: The selection of the tools was based on the aim of the study. In order to examine attitudes toward organ transplantation eight items were used. Some of the items were used in previous studies conducted by CBOS in 2012. The items selected for the purpose of the given study were, among others: consent to donate organs after death, conversations with the loved ones about the said issue, their knowledge of the moment of death and the legal framework concerning the procurement of organs from deceased persons. To examine the locus of control LOC-Delta questionnaire by R.L. Drwal was used. It contained 14 questions of the LOC scale and 10 questions of the “lies” scale. The LOC-Delta scale measured general locus of control, and then its relevance was verified by comparing the results with the Rotter scale.


113

Research variables: Dependent variable: Attitudes toward organ transplantation – positive or negative attitude toward organ transplantation is explained based on an opinion concerning organ donation, general knowledge about organ donation and transplantation (e.g. knowledge about the moment of death), willingness to be an organ donor for a stranger and a family member, a consent for organ donation after one’s death, a discussion with family members of about one’s organ donation, etc.

Independent variable: Locus of control – refers to the extent to which individuals believe they can control events affecting them. This understanding of the concept was developed by Julian B. Rotter in 1954, and has since become an aspect of personality studies. A person’s “locus” (Latin for “place” or “location”) is conceptualized as either internal (the person believes they can control their life) or external (meaning they believe their decisions and life are controlled by environmental factors which they cannot influence, or by chance or fate). According to Rotter’s theory, our individual sense of control over the environment is a learned mechanism. It is created based on individual experiences and connects with the environment and the rules of learning. The probability of a particular behaviour (behaviour potential, BP), according to Rotter, depends on expectations (expectancy, E) that this particular behaviour will lead to a certain strengthening and the value of which has a reinforcement (reinforcement value, RV) which is BP = f (E & RV) (Drwal, 1995). According to Rotter, there are two types of expectations: one related to a specific situation, the second – generalized, based on the experience gained in various life situations. Thus, it is a given situation and significance ascribed to it that may be more important than the objective characteristics of the situation in predicting human behaviour, as one perceives. According to Rotter’s theory, “when gain is perceived by an individual as immediately following their operation, but not entirely in line with this operation, then, in our culture, it is usually perceived to be a function of chance, destiny, luck, or controlled by others” (Doliński, 1993). Elizabeth Paszkiewicz, commenting on the results of research on the LOC, states that “if the individual notices a result of their activities outside its control, the result stops to control behaviour”. Locus of control is a generalized expectation of an individual regarding the relationship between behaviour and reinforcement. Locus of control is viewed as a dimension of personality and otherwise referred to as the location (locus, loc) of control. Depending on generalized expectations of an individual, for the internal versus external LOC (location

114


of control), the consequences of behaviour (reinforcement in the form of rewards or punishments) are perceived by those individuals as dependent versus independent of their behaviour (by: Krasowicz, Kurzyp-Wojnarska, 1990). Individuals with a strong internal locus of control believe that events in their life derive primarily from their own actions: for example, when receiving exam results, people with an internal locus of control tend to praise or blame themselves and their abilities. People with a strong external locus of control tend to praise or blame external factors such as the teacher or the exam. Locus of control generated much research in a variety of areas in psychology. The construct is applicable to such fields as educational psychology, health psychology and clinical psychology. The debate continues whether specific or more global measures of locus of control will prove to be more useful in practical application. Careful distinctions should also be made between locus of control (a concept linked with expectancies about the future) and attributional style (a concept linked with explanations for the past outcomes), or between locus of control and concepts such as self-efficacy.

Results H1: Young adults support organ transplantation The first measured variable was the attitude toward in the test group. This attitude was determined based on knowledge, behaviours and emotions associated with organ transplantation, both in relation to themselves and relatives. The results obtained in the test group in terms of attitudes toward transplantation, have been presented in Figure 1. Over seventy percent of all those interviewed (n = 30) expressed a positive attitude toward donating their organs. Only six percent presented a negative attitude. Other people`s attitude can be described as moderately positive. On the basis of descriptive statistics presented in Table 1, it can be observed that the average score for the attitude toward organ donation and transplantation in the study population was M = 14.6. This was confirmed by the fact that most respondents presented a positive attitude. Standard Deviation (SD = 3.97) indicate a rather low level of differentiation among these people.


115

Figure 1. Attitude toward organ donation and transplantation among young adults Table 1. Attitudes toward organ transplantation – descriptive statistics (n = 30). Arithmetic average

Median

Min.

Max.

Standard deviation

14.6

15.00

5.00

20.00

3.97

H2: Young adults with external locus of control have more negative attitudes toward organ transplantation than young adults with internal locus of control In order to verify this hypothesis Pearson’s correlation coefficient was used because of the conformity in the sign of skewness of the results of the independent (internal locus of control) and dependent variables. Empirical verification of hypotheses was connected with determining the strength of the association between the level of internal locus of control and attitude toward transplantation. The results obtained with the use of correlation have been shown in Table 2.

116


Table 2. The relationship between the level of internal locus of control and the attitude toward transplantation Mean Internal locus of control

10.36

Attitude toward transplantation

14.6

r (x,y)

p

0.69

p = 0.01

According to the data given in the table above, a positive correlation coefficient (r = 0.69) between the level of internal locus of control and attitude toward transplantation was obtained. This coefficient is statistically significant at p = 0.001. The scatter of results for the two analysed variables, has been presented in Figure 2. A positive correlation means that the increase in results on one variable is accompanied with increased results for the second variable. It confirms the result of statistical calculations and indicates that there is a significant relationship between internal locus of control and attitude toward transplantation.

Figure 2. Correlation between attitudes toward transplantation and internal locus of control

The higher the level of internal locus of control the more positive attitude toward transplantation. In order to verify second part of this hypothesis, Pearson’s correlation coefficient was used because of the conformity in the sign of skewness of the results of the independent (external locus of control) and dependent variables. Empirical verification of


117

hypotheses was connected with determining the strength of the association between the level of external locus of control and attitude toward transplantation. The results obtained with the use of correlation have been shown in Table 3. Table 3. The relationship between the level of external locus of control and the attitude toward transplantation Mean External locus of control

3.6

Attitude toward transplantation

14.6

r (x,y)

p

–0.67

p = 0.01

N 30 30

According to the data given in the table above, a negative correlation coefficient (r = –0.67) between the level of external locus of control and attitude toward transplantation was obtained. This coefficient is statistically significant at p = 0.001. The scatter of results for the two analysed variables, has been presented in Figure 3. A negative correlation means that the increase in results on one variable is associated with a decline of results for the second variable. It confirms the result of statistical calculations and indicates that there is a significant relationship between external locus of control and attitude toward transplantation.

Figure 3. C orrelation between attitudes toward transplantation and external locus of control

118


The higher the level of external locus of control the more negative attitude toward transplantation. Attitude is positively correlated with the internal locus of control and negatively correlated with external locus of control.

Main conclusions Over the years, broad support and acceptance to organ transplantation significantly increased among societies around the world. There is still a large and growing difference between the number of patients waiting for transplantation and the number of donors. As the public opinion polls show, the vast majority of the Polish population support transplant ex mortuo, and the level of acceptance is higher among the young and better educated. Results obtained by the CBOS agency in 2009 show that 91% of the respondents approve of organ procurement from deceased persons to save other people’s life or restore other people’s health (Gorzkowicz, Majewski, Tracz, 2010). Mass media play a very important role in educating the public and building a positive image of Polish transplantation medicine. Professor Wojciech Rowiński said that transplantation is an extremely sensitive method of treatment in the public’s perception, because every media news based on a lie or gossip is prevalent on rapidly and is connected with the decrease in the number of donors, and thus the quantity of transplanted organs. Only public acceptance of this treatment method can improve the number of cases of organ transplantation. It is still particularly important to run an continuous educational campaign about the needs and outcomes of organ transplantation. The results presented in this text are a proposal to extend the research and conduct a more detailed analysis of the existing relationships. It is necessary to: • promote knowledge about organ donation to raise people’s awareness and fight against stereotypes related to organ transplantation; • undertake activities aimed at increasing public trust toward the medical community; • encourage people to speak to their relatives and friends about their wishes concerning organ donation. Young adults in the study sample presented, in general, a positive attitude toward organ transplantation. Young people with external locus of control presented more negative attitudes toward organ transplantation than people with the internal locus of control. The review revealed the complexity of individuals’ attitudes toward organ donation and the need for more complex studies on interactions between the broader factors


119

influencing organ donation (such as social norms and the existing Polish legislation) and individual factors, such as attitudes and beliefs.

Bibliography CBOS (2012). Komunikat z badań. Postawy wobec przeszczepiania narządów. Chern, A. (2008). Regulation of Organ Transplants: A Comparison Between the Systems in the United States and Singapore. http://nrs.harvard.edu/urn-3:HUL.InstRepos:8963882 Coad L., Carter, N., Lingcorresponding J. (2013). Attitudes of young adults from the UK toward organ donation and transplantation. Transplant Res. 2013; 2: 9. Doliński D. (1993). Orientacja Defensywna. Warszawa: Wydaw. Instyt. Psych. PAN. Drwal R. (1978). Poczucie kontroli jako wymiar osobowości-podstawy teoretyczne, techniki badawcze i wyniki badań. Materiały do nauczania psychologii, seria III, T.3, s. 307–345. Warszawa: Wydawnictwo naukowe PWN. Drwal R.Ł. (1995). Poczucie kontroli jako wymiar osobowości – podstawy teoretyczne, techniki badawcze i wyniki badań. [w:] Brzozowski P. (red.) Adaptacja kwestionariuszy osobowości: wybrane zagadnienia i techniki. Ejere, V.Ch., Okanya, Ch.L. (2013). Organ transplantation and its physiological implications – A Review. Animal Research International 10(3): 1752 – 1778 Gorzkowicz B., Majewski W., Tracz E. i in. (2010). Opinia na temat dawstwa narządów wśród studentów uczelni wyższych Szczecina. Problemy Pielęgniarstwa 2010, tom 18, zeszyt nr 2 Gurba E. (2005). Wczesna dorosłość [w:] Harwas-Napierała B., Trempała J. (red.) Psychologia rozwoju człowieka. T.2. Charakterystyka okresów życia człowieka. Warszawa: PWN. Jorge S. Lo´peza, Marıá O. Valentıńb, (2012). Factors related to attitudes toward organ donation after death in the immigrant population in Spain. Clin Transplant 2012: 26: E200–E212 DOI: 10.1111/j.1399-0012.2011.01586.x Kośmider-Cichomska, A. (2002). Postawy wobec przeszczepu narządów. Raport z badań. IPSOS, Warszawa Krasowicz G., Kurzyp-Wojnarska A. (1990). Kwestionariusz do Badania Poczucia Kontroli. Podręcznik. Warszawa Levinson D. (1986). A conception of adult development. American Psychologist, Vol. 41, No. 1., p. 3–13. Ścisło L., Partyka E., Walewska, E. (2013). Attitudes and knowledge of rural and urbaninhabitants about organ transplantation. Hygeia Public Health 2013, 48(1): 40–45 Shimazono Yosuke (2007). The state of the international organ trade: a provisional picture based on integration of available information. Bulletin of the World Health Organization, vol. 85 (12). World Health Organization (2007). Bulletin of the World Health Organization,vol. 85 No 12. http://ekai.pl/wydarzenia/temat_dnia/x23199/polacy-o-przeszczepianiu-narzadow; 27.10.2009 http://tricolormedicos.com/organ-transplantation http://www.cbos.pl/SPISKOM.POL/2011/K_091_11.PDF http://www.simpexhealthcare.com/organ_transplant.php

Chapter 5

Life Satisfaction among Young Adults and their Attitude to Medical Transplantation and Organ Donation M a r t y n a J a n i ck a , A g n i e s z k a K r u c z e k 1 9

Theoretical introduction Psychology in its broad sense is an empirical science rooted in life sciences and humanities and using methods and techniques characteristic of these two fields. Some psychological studies (e.g. in the field of psychophysiology) are based on strict data control and measurements that allow drawing statistical conclusions and other are also connected with phenomenological and subjective aspects. The other ones do not change the image of a studied phenomenon, but give them some kind of profoundness. There are also issues which seem to be best approached with qualitative methods (Straś-Romanowska, 2010). One of such issues appear to be the attitude towards transplantation, which for some diseases is an only possible treatment, provided that a suitable donor is found (Ławecka, Gotlib, 2013). From the point of view of psychology, problems related to transplantation may be examined in numerous aspects, among which a group of problems focusing on the donor and their family plays an important role (Ratajska, 2011). Death of a loved one is a loss, painful and shocking experience, often traumatic; therefore, the closest family of a deceased potential donor is faced with a very difficult situation (Storkebaum, 1999). The procedure of harvesting organs raises also ethical and psychosocial issues, which can be differentiated, depending on such questions as whether the organs are to be harvested from a deceased donor or a living donor (Ratajska, 2011).

Department of Psychopathology and Clinical Diagnosis, Institute of Psychology, Kazimierz Wielki University in Bydgoszcz. 19

Chapter 5. Life Satisfaction among Young Adults and their Attitude to Medical Transplantation…

121

Attitude towards transplantation seems to be related to many psychological variables, such as satisfaction with life, although there are few findings on such possible dependence. Satisfaction with life is a cognitive component of subjective human welfare and refers to the way in which an individual assesses the quality of their life according to their own criteria. Because individuals have very diverse standards when it comes to determining how they define success in various spheres of their life, it is becoming more important to assess one’s own life globally than just satisfaction achieved in its particular spheres. Satisfaction with life does not concern a short period; it is a result of long reflection (Pavot, Diener, 1993), as well as an all-embracing assessment and as such is relatively permanent (Basińska, Łuczak, 2014). It depends on long-term (e.g. personal traits), medium-term (e.g. life events or cognitive schema), as well as short-term (e.g. current mood) components (Pavot, Diener, 1993). However, the studies demonstrate that satisfaction with life depends largely upon personal properties and more accurately – personal traits and the level of self-acceptance (Diener, Oishi, Lucas, 2003). There are no clear-cut findings on the relationship between satisfaction with life and sociodemographic variables. Some of the studies show that satisfaction with life is not in any way related to age and sex (Arrindell, Ettema, 1986, after: Pavot, Diener, 1993; Basińska, Marzec, 2007; Basińska, Drozdowska, 2013). Women and young people sometimes demonstrate slightly higher satisfaction with life (Basińska, Marzec, 2007; Ogińska-Bulik, Juczyński, 2008; Basińska, Drozdowska, 2013). In general, better educated people have been found to experience more satisfaction (Salinas-Jimenez, Artes, Salinas-Jimenez, 2011). In summation, it is worth emphasizing that there is no single answer to the question about the dependence of life satisfaction, as it is influenced not only by numerous variables, but also by complex cultural, personal, and environmental relationships (Diener, Suh, Lucas, Smith, 1999). What is more, many aspects of psychological function of a human being reveal relationships with life satisfaction (Basińska, Sucharska-Daraż, Wolszczak, 2014).

Research problems Apart from explicitly declared approaches and attitudes towards various phenomena, there are also such approaches and attitudes which are less conscious or which people do not usually contemplate about. A moment of reflection may come about in a situation when a given phenomenon starts to concern a particular person or a member of their closest family (cf. Machnicka, Tkaczyk, 2012).

122


The aim of the present research is to check the attitude towards transplantation among students of medical fields (medical rescue and optics with optometry) and psychology. The studies were carried out to establish answers to the following questions: 1. What is the level of satisfaction with life among the group of students? 2. What is the attitude of the group of students towards transplantation? 3. Do persons with a higher level of satisfaction with life decide more often to donate their organs for transplantation? 4. Do persons with a higher level of satisfaction with life talk more often to their family about possible donation of their organs after their death? 5. Could the type of donor affect the willingness to donate an organ for transplantation, taking into account the level of satisfaction with life?

Research methods Two methods were used in the research: 1. Satisfaction With Life Scale (SWLS) developed by Diener et. al. in Polish adaptation by Juczyński (2001). The scale is composed of five statements which a participant responds to, assessing the degree in which each of the statements is relevant to their life so far. Answers are given, using a seven-degree scale from 1 – “Strongly disagree”, to 7 – “Strongly agree”. General result is the total sum of all answers. The results range from 5 to 35. The higher result, the higher satisfaction with life. The obtained results may be converted into sten score, where 1–4 sten values are considered low, 5–6 sten medium, and 7–10 sten high (Juczyński, 2001). 2. Survey created for the purposes of the research measuring attitude towards transplantation based on 15 questions about such issues as accepting transplantation as one of the methods of treatment, attitude towards being a living or deceased organ donor for a loved one or a stranger, or declaration on the possibility of donating organs of a loved one after their death for transplantation. Additionally, the survey also contained questions regarding sociodemographic variables.

Study group 188 students took part in the studies, of which 23.94% were men (n = 45) and 76.06 were women (n = 143). They were students of medical fields (45.21%, n = 86), such as medical rescue and optics with optometry, and psychology (54.79%, n = 103) at universities in Bydgoszcz. Average age of the study group amounted to 20.57 (SD = 2.22), the

123

Chapter 5. Life Satisfaction among Young Adults and their Attitude to Medical Transplantation…

youngest one being 18, and the oldest one 41. Most of the participants had secondary education (95.74%). The respondents came mostly from a city with population of more than 250 thousand (31.38%) (Table 1). Table 1. Profile of the study group (N = 188) with regard to their sociodemographic and biographical features Woman (n = 143)

Demographic variables n

Man (n = 45) %

Together (n = 188)

n

%

n

%

Field of study Emergency medical and optics with Optometry Psychology

53

37,06

32

71,11

85

45,21

90

62,94

13

28,89

103

54,79

Education Secondary education Higher education

137

95,80

43

95,56

180

95,74

6

4,20

2

4,44

8

4,26

Size of place of living Villlage

32

22,38

7

15,56

39

20,74

Town of 25 thousand inhabitants

29

20,28

10

22,22

39

20,74

City of 100 thousand inhabitants

21

14,69

8

17,78

29

15,43

City of 250 thousand inhabitants

10

6,99

3

6,67

13

6,91

City more than 250 thousand inhabitants

44

30,77

15

33,33

59

31,38

Were you a donor organ for transplant? Yes No

1

0,70

0

0

1

0,53

142

99,30

45

100

187

99,47

Is someone in your family was a donor organ for transplant? Yes

4

2,80

1

2,22

5

2,65

No

139

97,20

44

97,78

183

97,45

Do you have a transplanted organ? Yes

1

0,70

0

0

1

0,53

No

142

99,30

45

100

187

99,47

If someone in your family has a transplanted organ? Yes

7

4,90

0

0

7

3,70

No

136

95,10

45

100

181

96,30

Among the participants, one person (0.53) had been an organ donor and five (2.66%) declared that their loved one had been. One person from the study group (0.53) lived with a transplanted organ and seven participants (3.72) said that their loved ones had undergone transplantation.

124


Results The analyses were carried out with Statistica 10 software on raw scores and with reference to the Polish standard group provided in the manual of the software used. In order to present the participants of the study, descriptive statistics were used: mean and standard deviation, whereas group comparisons were carried out with Mann–Whitney U test. The analyses assumed the level of statistical significance p