Increasing Capacity for Tobacco Research in

Increasing Capacity for Tobacco Research in Hungary 2008–2013

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Increasing Capacity for Tobacco Research in Hungary 2008–2013

MAGYAR TUDOMÁNYTÖRTÉNETI INTÉZET BUDAPEST, 2013

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Increasing Capacity for Tobacco Research in Hungary 2008-2013 Peter Balázs M.D., Ph.D. Kristie L. Foley Ph.D. Doug Easterling Ph.D. Todd Rogers Ph.D. John Spangler M.D., M.P.H. Erin Sutfin Ph.D. Mark Wolfson Ph.D. Márk Antal D.M.D. Andrea Barsai M.D. József Bodrogi M. Sc. Zsuzsanna Csákányi M.D. Zsolt Demetrovics Ph.D. Andrea Fogarasi-Grenczer C.F.N.P Gábor Katona M.D. Ph.D. Gábor Kovács M.D. Zoltán Lomnici J.D. László Molnár M.D. Ph.D. Katalin Nagy D.M.D., Ph.D. Edit Paulik M.D., Ph.D. Melinda Pénzes M.D. Ildikó Rákóczi C.F.N.P Róbert Urbán Ph.D. peer reviewed by László Nagymajtényi M.D., Ph.D., D.Sc.

This publication was made possible by Grant Number 1 R01 TW007927-01 from the Fogarty Inter-national Center, the National Cancer Institute, and the National Institutes on Drug Abuse, within the National Institutes of Health (NIH). Its contents are solely the responsibility of the authors and do not necessarily represent the official view of the NIH.

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Table of Contents

Building Capacity for Tobacco Research in Hungary ..................................... 9 (Kristie Foley, Doug Easterling, Todd Rogers, Erin Sutfin, Mark Wolfson, John Spangler, Péter Balázs) Introduction ............................................................................................................. 9 The Epidemiological, Political, and Scientific Context that Inspired the Initiative ................................................................................................... 10 Politics, Science, and Activism ............................................................................ 11 Mentoring .............................................................................................................. 15 Formal Training .................................................................................................... 15 Visits to the U.S. .................................................................................................... 16 Dissemination ........................................................................................................ 17 Monitoring ............................................................................................................. 17 Progress to Date .................................................................................................... 18 References .............................................................................................................. 20 Health status of expectant mothers based on an epidemiological survey in Roma and non-Roma populations ................................................... 23 (Péter Balázs) Summary ................................................................................................................ 23 Specific survey problems targeting the Roma population ............................ 23 Material and Methods ......................................................................................... 26 Results .................................................................................................................... 28 Discussion .............................................................................................................. 34 Acknowledgements .............................................................................................. 36 References .............................................................................................................. 36 Social determinants of smoking and quitting in Hungary ......................... 39 (Edit Paulik) Summary ................................................................................................................ 39 Introduction ........................................................................................................... 39 Methods and participants ................................................................................... 42 Results .................................................................................................................... 45 Discussion .............................................................................................................. 53

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Conclusions ........................................................................................................... 56 References .............................................................................................................. 57 Relationship of passive cigarette smoking to middle ear inflammations and other respiratory diseases in children .......................... 61 (Zsuzsanna Csákányi, Gábor Katona) Healthcare and social impact of the diseases .................................................. 61 Ethiopatogenesis and risk factors ...................................................................... 61 The impact and determinant factors of SHS exposure in the development of middle ear infections and respiratory diseases in children ....................................................................................... 62 Results .................................................................................................................... 65 Results .................................................................................................................... 67 Results .................................................................................................................... 69 Options of the preventative facilities ................................................................ 70 Acknowledgements .............................................................................................. 70 References .............................................................................................................. 71 Adolescent tobacco smoking: facts, knowledge and opinions based on a prospective study ............................................................................... 75 (Melinda Pénzes) Summary ................................................................................................................ 75 Introduction ........................................................................................................... 75 Material and methods .......................................................................................... 77 Characteristics of the sample .............................................................................. 79 Changes of tobacco smoking prevalence ......................................................... 81 Implementation of smoke-free law in schools ................................................ 85 Awareness of smoking-related health impacts ............................................... 88 Characteristics of school-based anti-smokinginterventions .......................... 90 Discussion .............................................................................................................. 92 Limitations ............................................................................................................. 96 References .............................................................................................................. 97 Outcome expectancies in adolescent smoking ................................................ 99 (Róbert Urbán, Zsolt Demetrovics) Summary ................................................................................................................ 99 Introduction ........................................................................................................... 99 Method ................................................................................................................. 101 Results .................................................................................................................. 105 Discussion ............................................................................................................ 112 References ............................................................................................................ 115

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Identifying a high risk group for early detection of lung cancer, follow up of lung cancer patients and analysis of their smoking habits ......................................................................................................................... 119 (Gábor Kovács*, Andrea Barsai**, László Molnár***) Summary .............................................................................................................. 119 Background ......................................................................................................... 120 Aim ........................................................................................................................ 123 Method ................................................................................................................. 123 Results .................................................................................................................. 126 Discussion ............................................................................................................ 134 Acknowledgements ............................................................................................ 136 References ............................................................................................................ 136 Socioeconomic factors of tobacco smoking during pregnancy ................. 139 (Andrea Fogarasi-Grenczer) Summary .............................................................................................................. 139 Individual and social consequences of tobacco use in the fertile population .................................................................................................... 139 The consequences of smoking during pregnancy ........................................ 140 Material and Method ......................................................................................... 141 Features of expectant mothers smoking during pregnancy ....................... 142 Acknowledgements ............................................................................................ 148 References ............................................................................................................ 148 Tobacco use and cessation among dental professionals ............................ 151 (Mark Antal, Katalin Nagy) Summary .............................................................................................................. 151 Introduction ......................................................................................................... 152 Attitude of dental professionals towards smoking and cessation ............. 154 Methods ............................................................................................................... 154 Results .................................................................................................................. 155 Discussion ............................................................................................................ 159 Conclusions ......................................................................................................... 160 Implementation of video-feedback based communication in the tobacco cessation counselling course for undergraduates ............. 161 Introduction ......................................................................................................... 161 Methods ............................................................................................................... 161 Results .................................................................................................................. 167 Discussion ............................................................................................................ 169 Conclusions ......................................................................................................... 170 General comments ............................................................................................. 171

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Acknowledgements ............................................................................................ 171 References ............................................................................................................ 171 Socio-economic Background of Continued Smoking during Pregnancy in Hungary ......................................................................................... 175 (Ildikó Rákóczi) Summary .............................................................................................................. 175 Harmful impact of smoking during pregnancy ............................................ 175 Sample and methods ......................................................................................... 177 Results .................................................................................................................. 179 Discussion ............................................................................................................ 182 References ............................................................................................................ 183 Economic impact of tobacco smoking ............................................................. 185 (József Bodrogi) Introduction ......................................................................................................... 185 Agricultural production and tobacco industry .............................................. 186 The role of the state ............................................................................................ 187 Public health concerns ....................................................................................... 195 Social burden of tobacco smoking ................................................................... 196 Introduction ......................................................................................................... 201 Material and Methods ....................................................................................... 201 Results of the chemical analyses ...................................................................... 205 Discussion ............................................................................................................ 210 Conclusion ........................................................................................................... 212 Acknowledgements ............................................................................................ 212 References ............................................................................................................ 213 Hungary’s legal regulation of smoking from the Austro-Hungarian conciliation till present days .............................................................................. 215 (Zoltán Lomnici) Summary .............................................................................................................. 215 A short history of tobacco in Hungary ........................................................... 215 Legislation levels of smoking inhibition in Hungary ................................... 219 Conclusion and recommendations de lege ferenda ..................................... 231 References ............................................................................................................ 232 Appendix of publications and presentations 2008–2013 ............................. 233

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Building Capacity for Tobacco Research in Hungary Kristie Foley, Doug Easterling, Todd Rogers, Erin Sutfin, Mark Wolfson, John Spangler, Péter Balázs

Introduction More than three-quarters of the world’s one billion smokers live in low- and middle-income countries (LMICs) [1]. Despite the high prevalence of tobacco use and the impending threat of huge growth in the burden of tobacco dependence and disease these countries will face in the future there has been a dearth of tobacco research in LMICs. Only 7.2% of the manuscripts appearing in the international Tobacco Control during the period 1992-2006 were coauthored by LMIC scholars, and lead authorship was only 4.0% [2]. Yet, worldwide 80% of non-communicable diseases commonly associated with tobacco use (e.g., cardiovascular disease, cancer, COPD) occur in LMICs [3]. The U.S. National Institutes of Health has supported the International Tobacco and Health Research and Capacity Building Program through multiple waves of funding beginning in 2001 [Request for Applications (RFA) TW-02-005, TW-06-006, and TW-11-003]. The purpose of this new initiative is to increase tobacco science among LMICs, with the premise that increasing the capacity and productivity of tobacco scientists in these countries will advance tobacco control policy and thereby reduce tobacco-related morbidity and mortality [4]. During the first round of the initiative, thirteen grants were funded to support work in eight low- and middle-income countries or continents: one each for work in Egypt, Syria, Cambodia, Argentina, and Russia, with multiple projects each in Africa, China, and India. None of the first-round projects were based in Central and Eastern Europe (CEE), even though according to the WHO (2007) these countries have very high rates of tobacco use among adults: Ukraine (36%); Hungary (34%); Slovakia (32%); Romania (34%); Serbia and Montenegro (42%); Croatia (27%); and Slovenia (28%). This gap was remedied in the second round, when NIH awarded a grant to build the capacity for tobacco research in Hungary. Hungary (an upper-middle income country at the time) has one of the highest percentages of smoking-related deaths in the European Union (EU) (21%), and is surrounded by CEE countries that also have serious tobacco problems [5, 6]. The purpose of this book is to provide an overview of tobacco research that was conducted in Hungary after investigators were funded in the second round of the International Tobacco and Health Research and Capacity Building Pro-

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K. FOLEY, D. EASTERLING, T. ROGERS, E. SUTFIN, M. WOLFSON, J. SPANGLER, P. BALÁZS

gram (Grant Number 1 R01 TW007927-01, PI: Foley). The Hungary project had two main goals: 1. to advance the scientific activity of Hungarian scholars in the field of tobacco research; and 2. to create a network of scholars whose work could advance tobacco control policies and programs in the country. This opening chapter offers the reader an overview of the conceptual and operational factors that contributed to the development and implementation of our capacity building initiative to meet these goals.

The Epidemiological, Political, and Scientific Context that Inspired the Initiative In 2007, at the outset of this project, more men were dying in Hungary of lung, mouth, esophageal, and laryngeal cancer than in any other EU member country [7]. Women as well as men were heavily affected, ranking first in the EU in mouth cancers and second in lung cancer mortality. Although smoking prevalence had declined in the early nineties, evidence from 2000 to 2006 revealed that the decline had leveled among men and that smoking prevalence had likely increased among women. Yet, country-specific, actionable tobacco research was lacking to inform a comprehensive strategy to reduce the tobacco-related morbidity and mortality in Hungary. Although some studies pertaining to tobacco use, mortality and morbidity in Hungary had been published prior to 2007, this research primarily involved determinants of tobacco use drawn from cross-sectional surveys [8-15]. Although environmental and social determinants of tobacco initiation and continued use are well-documented, there was little known about the economic, political and social forces that encouraged and sustained high rates of consumption in Hungary, and almost no information on special populations disproportionately affected by tobacco, such as the Roma population and pregnant women [15, 16]. Tobacco science in Hungary was limited not only by a lack of in-depth studies, but also by a failure to translate research findings that were available into policies and programs to prevent tobacco use and promote cessation. This inability to translate international scientific knowledge into effective tobacco control programs and policies was hindered by the following factors: 1. the lack of political will for strong tobacco control policies; 2. an under-developed scientific program directly relevant to the nature of the tobacco problem in Hungary; 3. lack of a robust non-governmental sector with limited access to actionable tobacco research; and

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BUILDING CAPACITY FOR TOBACCO RESEARCH IN HUNGARY

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4. the non-existence of a network of Hungarian scientists involved in tobacco research who were collectively engaged in advancing science and translating research into programmatic and policy change. The NIH-funded Building Capacity for Tobacco Research in Hungary project was designed to improve the translation process by directly addressing factors 1, 3 and 4.

Politics, Science, and Activism In 1997, 10 years prior to the advent of our capacity building tobacco research project, the “Tobacco and Alcohol Policy Development Project” was launched within the Public Health Subcomponent of the Hungarian Health Sector Modernization project. That project, then funded by the World Bank Institute, was the only formal attempt to enact tobacco control legislation in Hungary. Although the project was disrupted before it achieved comprehensive tobacco control, it nonetheless led to two important pieces of national legislation passed by the National Assembly in the late1990s. The first regulates the advertising of tobacco products [1997: Act LVIII on Business Advertising Activity (restrictions on advertising of tobacco products); and the second governs (partial) protection from environmental tobacco smoke 1999: Act XLII on the Protection of Non-smokers and Certain Regulations on the Consumption and Distribution of Tobacco Products]. In early 2000s, some NGOs continued the initiatives that were either launched or promoted by the Tobacco and Alcohol Policy Development Project World. [16] However, their efforts were neither well-organized nor strategic. Like other LMICs, national resources available in Hungary for scientific research have been limited, creating fiscal and personnel challenges to creating a network of tobacco control scholars and activists. As a result, there was a dearth of tobacco science and activism in Hungary and no strategy to lead a national tobacco control program consistent with the goals of the World Health Organization Framework Convention on Tobacco (FCTC). The FCTC is the first international treaty negotiated under the World Health Organization in response to the global threat of tobacco. The FCTC demands price and tax measures to reduce demand for tobacco, non-price measures to reduce demand (e.g., clean indoor air laws, regulation of tobacco products, packaging and labeling, public awareness) and reductions of supply by reducing illicit trade, sales to and by minors, and provision of economically viable alternatives. A country’s responsiveness to FCTC serves as a signal for support of strong, anti-tobacco legislation and practices. Importantly, Hungary was also one of the first European Countries to adopt the FCTC in 2003, representing an initial commitment to comprehensive tobacco control [17].

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The NIH-Sponsored Initiative to Build Capacity for Tobacco Research in Hungary High tobacco-related morbidity and mortality, lack of scientific activity and political will for tobacco control, and its signatory to the FCTC created the rationale for a Hungarian application to the second NIH RFA International Tobacco and Health Research and Capacity Building Program. Serendipity played a key role in writing a successful application. In 2006, Kristie Foley, a tobacco researcher then based at Wake Forest School of Medicine and lead author of this chapter, received a Hungarian-American Fulbright Fellowship to Hungary. At nearly the same time that Dr. Foley was notified of the fellowship, NIH reissued its RFA call for proposals for the International Tobacco and Health Research and Capacity Building Program. As it so happened, several of Dr. Foley’s future colleagues at Semmelweis University had interests in tobacco research, and Peter Balázs had expertise in the history and political economy of medicine, that created the right combination of intellectual interest and expertise to initiate the application. In July 2006, six months prior to the Fulbright initiation, Prof. Foley met with future colleagues from Semmelweis University and other academics and clinicians from Hungary to identify tobacco research priorities for Hungary, reach consensus regarding Specific Aims for the grant that they would collectively write, and identify strategies to accomplish these aims. There was consensus within this group that it was critical not only to train individuals to excel in tobacco research, but also to create a strategic, organized effort that would lead to tobacco research being sustained beyond the grant period. Capacity building would require a network-oriented approach that could bring together diverse, geographically-dispersed scientists and stakeholders to assemble, receive formal training and mentoring from more seasoned tobacco scientists in the U.S. and Hungary, and develop a strategy for effective, sustained tobacco research, programs and policies to help curb the tobacco epidemic in Hungary. Semmelweis University was selected as the host institution because of its excellent reputation, its strong tradition in training public health and health care professionals in Hungary, and its central location. Ten individuals from throughout Hungary attended the initial meeting, and ultimately eight pilot projects were included in the grant application, which was submitted in September, 2006. Peter Balázs would lead the Hungarian delegation. At the time, he served as Head of the Department of Public Health at Semmelweis University in Budapest and chaired the Advisory Committee of the Ministry of Health in Preventive Medicine and Public Health affairs in Hungary. In January 2007, Prof. Foley arrived at Semmelweis University for her Fulbright fellowship, under the mentorship of Peter Balázs, where she would spend six months teaching courses in health promotion and disease preven-

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tion and conducting tobacco control research [18]. This in-country experience would prove to be invaluable in terms of understanding the local history and culture as they relate to academia, science, and policy-making. In July 2007, one month after Prof. Foley had returned to the U.S. from her Fulbright fellowship, she received official notification that the grant had been awarded. The grant kicked off in the fall 2007 and was co-led by Professors Foley and Balázs. The team supporting the leaders included well-respected tobacco control and organizational capacity scientists from the U.S. and Hungary. The international partners collectively had formal training in psychology, sociology, communications, health behavior, health policy and legislation, economics, social ecology, chemistry, pharmacology, nursing, dentistry, and medicine. The majority of the Hungarian partners had formal training in medicine.

Core Elements of the Initiative The capacity building framework that was developed for the proposal to NIH began with a diverse group of scientists, clinicians, doctoral students who were committed to rigorous and relevant tobacco research. Some of the individuals participating on the project had never met prior to the project. By design, the group included scientists from a range of disciplines and at varying career stages. For the most part, the more “seasoned” scientists in the group did not have a great deal of experience studying tobacco-related issues. Eleven teams of Hungarian scientists participated at the outset of the initiative. Their initial projects were the following: – Longitudinal Study of the Social Predictors of Adult Smoking – Budapest Adolescent Smoking Study – Longitudinal Study of Weight Management and Tobacco Smoking among Children – Impact of Smoking during Pregnancy on Preterm Birth and Low Birth Weight – In-Depth Psychological Issues of Addiction and Counter-Advertising – Can a National TB Program be used to Reduce Morbidity and Mortality associated with Lung Cancer and COPD – Influence of Environmental Tobacco Smoke on Adverse Outcomes in Children – Tobacco Prevention and Cessation Education in Dental Schools – Regulatory and Legal Approaches to Reduce Youth Access to Tobacco – Economic Policy of Pharmacotherapy for Tobacco Cessation – Effectiveness of Price Increases in Curbing Tobacco Consumption–MacroLevel Analysis Each project had unique elements with respect to the population studied, research design and sampling, implications for programmatic and policy options, and scientific output. Some projects grew into something bigger than

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ever anticipated. For example, the Impact of Smoking during Pregnancy study anticipated collecting data from approximately 2,000 mothers, but ultimately led to the largest ever study of pregnancy and smoking in Europe, with surveys among >17,000 mothers with newborns in 2009 and 2011. While most projects remained true to their original course, some changed their aims as the investigators developed new interests and/or the larger political/regulatory context shifted. For example, the Economic Policy of Pharmacotherapy for Tobacco Cessation and Effectiveness of Price Increases were rolled into a broader study of the economics of tobacco in Hungary with a new focus on illicit trade (including macro-economics and the chemical content of smuggled tobacco products). Regulatory and Legal Approaches to Reduce Youth Access to Tobacco was completely re-worked when clean indoor air legislation diminished the need for the analysis. In its place, the research team developed the study, Tobacco Use among Female Correctional Inmates. These shifts in emphasis were possible because the funds available through the grant were intentionally flexible. Equally important was the dissolution of one project, In-Depth Psychological Issues of Addiction and Counter-Advertising, when the project had reached its maximum potential after two years of support. Our team also lost two of its original scientists due to lack of interest, time, or both. The leaders and mentors on the initiative responded to lessons learned and changes in the socio-political context, in order to foster research that allowed for adjustments and maintained responsiveness to the project’s overarching aims. The responsiveness of our team allowed us to meet the immediate needs of the scientists, dissolve projects (or recreate them) when they were no longer aligned with the overarching project goals, and at the same time advance tobacco control policy and programming in Hungary. The grant from NIH was designed to support 5 years of research by each of the Hungarian teams, along with a separate stream of funding to the U.S. team to support their efforts to help build the capacity of the Hungarian scientists and conduct evaluation. Based on our understanding of the needs and interests of the Hungarian scientists, coupled with the unique political-cultural context of Hungary, we decided to adopt a capacity-building approach that emphasized individualized mentoring. We purposely downplayed the formal educational training or “degree-seeking” approach that one might typically employ under a capacity-building model. The core elements of our approach included: assigning U.S. scientists to provide ongoing guidance and mentoring to each Hungarian team, selected training on tobacco-related topics that would be relevant to all the Hungarian scientists, organized visits to the U.S. where Hungarian scientists could receive tailored training and observe collaborative research in practice, and high expectations and support for the dissemination of research findings – through publications and scientific presentations, especially in English language venues.

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Mentoring At the outset of the project the U.S. team reviewed project proposals from the 11 Hungarian teams selected to participate in the initiative. The U.S. team observed wide variation in the “readiness” of the teams to proceed, based in large part on between-team differences in their research experience and understanding of key features of research methodology, such as study design, sampling, and data analysis. The U.S. team determined that it would be best to provide tailored assistance to each team, with some team members requiring training and mentoring on the fundamentals of conducting research, while others benefitting more from sophisticated conversations around the most appropriate statistical analysis and survey methodologies for their research. In order to structure the project in a way that would allow this level of flexibility, each Hungarian research project partnered with two or three U.S.based scientists who offered critical feedback and guidance. Only after the research project was deemed to have merit by the U.S. team and had received appropriate human subjects’ approvals from their local universities, were the individual projects funded. Moreover, continued funding depended on evidence of progress in the research. The initial mentoring teams were all U.S.-based, but as scientific leaders within the Hungarian team emerged, they too became mentors who provided critical, ongoing, in-country support for their Hungarian colleagues. Thus, while formal U.S.-based mentoring teams existed from the beginning, the mentoring relationships evolved as more experienced Hungarian scientists on the team emerged as leaders in the initiative.

Formal Training At least once each year, members of the U.S. team traveled to Hungary to consult with and provide support to each of the research teams, to promote discussions across projects, and to provide training to the group as a whole in some area of tobacco control and/or research methodology (e.g., MPOWER, Framework Convention on Tobacco Control). These trainings were provided in the context of day-long meetings involving all 11 Hungarian teams. The meetings also included time for each Hungarian team to present its progress to date. Our goal in combining these presentations with training sessions was to encourage scientists to articulate links between research, practice, and policy in tobacco control-thus, they shared the same ‘time and space’ for their discussion. While this process was critical to understanding the status of the projects and offering mentoring, these meetings posed a common challenge in interna-

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tional research: language barriers. Hungarian scientists gave formal presentations in English so that that Americans could understand; yet, the experience was hampered because the richness of scientific experience is difficulty to convey in a non-native language. The U.S. team members had limited to no knowledge of the Hungarian language and were therefore left without an understanding of the “side conversations” that naturally (and importantly) occurred when dialogue was allowed to move freely among the scientists. Thus, while these presentations were rather formal during the first two years, they became more interactive in later years for two important reasons. First, the English language skills of some Hungarian colleagues improved considerably over the course of the grant (an unanticipated consequence of our project) creating an opportunity for more dialogue. Second, scientific conversations were increasingly conducted in Hungarian without a need for English translation as the projects were well-underway, as scientists began to trust one another, and as the role of the Americans shifted from mentor to collaborator.

Visits to the U.S. As shared interests among scientists began to emerge and natural networks grew out of the various projects, scientists who were making strides in their research activities were invited to the U.S. for more intensive training in research methods and linking their work to programmatic and policy change. In the second year of funding, three scientists visited the U.S, as a group, where they received advanced statistical methods training, individualized consultations on analyses, guidance on manuscripts and future scientific directions, professional coaching, presentations on advocacy on health and health care, coalition building, and the translation of science to practice in the Hungarian context. These visits also afforded the scientists the opportunity to meet with scientists beyond the project who could provide valuable information or perspectives (e.g., biostatistician, health economist, clinicians). The annual visits to Wake Forest School of Medicine and to Davidson College (where Prof. Foley now teaches) were timed so they would allow the visiting Hungarian scientists to also participate in annual meetings of the Society for Research on Nicotine and Tobacco (SRNT). The intent of this was two-fold: to provide a glimpse into the culture of tobacco control science and medicine in the U.S., and to offer new perspectives on how and why tobacco research is conducted. With their visits to the SRNT meetings and to research institutions in North Carolina, the Hungarian scientists were afforded considerable opportunities for individual meetings over a series of days, while at the same time being exposed to tobacco science and tobacco issues presented by scholars from around the globe. One of the most important – yet unintended – consequences of this effort

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was that the small groups of Hungarian scientists who traveled to the U.S. together germinated new project ideas and developed ways to engage in future research and clinical endeavors. These visits became a turning point for many of the Hungarian scientists and were instrumental in the scholars’ transformation into dedicated tobacco scholars. A downside of our initiative is that not all Hungarian scientists were able to come to the U.S. for a small networking meeting (outside the formal conference venue).

Dissemination As a condition of participating in the initiative, the Hungarian scientists faced high standards and expectations, especially with respect to disseminating their research at national and international conferences, as well as in peer-reviewed academic journals. The scientists were expected to publish multiple articles in both Hungarian and English language journals. Funding was allocated to conference travel explicitly for the purpose of dissemination. The emphasis on English-language publications led to heightened collaboration between the Hungarian and American scientists, which in turn proved mutually beneficial. Academic Hungarians, facing the changing tides instituted by the Bologna Process, were especially appreciative of the English-language opportunities, as publishing in English was very useful for the habilitation (i.e., promotion) process. The Bologna Process, launched by the European Higher Education Area in 2010 and in response to the Bologna Treaty of the European Union (signed in 1999), was intended “to ensure more comparable, compatible and coherent systems of higher education in Europe” [19]. The series of reforms raised the performance standards of faculty to include expectations of English-language publications. Similarly, the U.S. team also gained opportunities to collaborate on, and publish in, the area of international tobacco research.

Monitoring Monitoring of the initiative was conducted through semi-annual written progress reports and annual face-to-face meetings. The progress reports captured information about the following: scientific activity, collaboration among persons within and outside the formal network of scientists, challenges related to the research, new opportunities, teaching/training activities, and dissemination (e.g., presentations, manuscripts). These reports were used to guide mentoring and training activities and to evaluate the overall project. The heart of our capacity building model was based on sponsorship and

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mentoring of research projects with continued reminders of the need to link scientific activity with output (manuscripts, new courses/training activities, clinical changes, programmatic changes, and policy relevance). The translation of science to action was a theme repeated throughout the initiative.

Progress to Date This book offers the reader an overview of the research activities accomplished during the project period. The findings from these projects fill important scientific gaps related to the high rates of tobacco morbidity and mortality in Hungary. For example, the work of Paulik shows that higher tobacco use and lower quit attempts among persons and communities with lower socioeconomic status, contribute to disparities in mortality and morbidity. The most comprehensive cohort studies of adolescent tobacco use behavior ever conducted in Hungary was led by two teams (Urbán and Pénzes) and resulted in a richer understanding of the risk and protective factors related to the initiation of tobacco use among youth. The economic analysis by Bodrogi illustrates how tobacco smuggling has led to stability in the amount of tobacco consumption, despite Hungary’s aggressive pro- tobacco tax policies. The work by Balázs, Rákóczi, and FogarasiGrenzer has produced the most comprehensive epidemiological study on the high prevalence of tobacco use among Roma and the devastating impact of tobacco use on birth outcomes in this highly marginalized community. In addition to contributing to the literature on the very high rates of tobacco use among Roma, the work also demonstrated the value of conducting research within this community and the need for tailored, culturally-relevant interventions. Kovács and Molnár demonstrate the importance of the tobacco use not only as risk factor, but as a prognostic factor for survival among lung cancer patients. Their findings then led to the utilization of pre-existing tuberculosis screening programs into lung cancer screening and tobacco cessation counseling programs for persons at high-risk for lung cancer – utilizing an existing resource in the Country’s epidemiological transition from an infectious disease to chronic disease state. While screening for lung cancer has historically been unacceptable in the cancer control community, Kovacs’ work in on the cutting edge of science that shows the utility of low-dose CT screening as a viable, low-cost screening procedure for high-risk populations [20]. While these studies add value to the scientific literature, when presented individually, we believe they fail to capture the synergies achieved in this capacity building initiative. For example, scholars in this project not only led scientific research of their own, but also offered many new tobacco prevention and cessation training programs among physicians and nurses in pulmonology, dental professionals and dental students, law students, economics stu-

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dents, community health visitors, and policy makers. Junior scientists were mentored by senior scientists on the team, and people outside the formal research team were mentored, wrote papers, and prepared theses on tobacco control research topics. The scope of the capacity building activities extends well-beyond the boundaries of the formal research team and cannot be fully captured by a collection of individual project reports. Capacity expansion is also evident in the new networks and collaborations that the funding initiative has fostered. For example, a new, externally-funded project led jointly by Kovács (pulmonologist) and Urbán (psychologist) shows how two persons who did not previously know each other, with disparate disciplinary training, have joined together to enhance and evaluate Hungary’s national tobacco quit line. In addition, the study led by Balázs, Rákóczi, and Fogarsi-Grenczer, on tobacco use in pregnancy, began as a regional study in the northeastern county of Hungary. Today, the project is being implemented in four counties and the capital city, Budapest and new members of the network have joined the team. In addition, Urbán, Paulik, and Pénzes have benefited from sharing survey questions that have led to joint research activities not originally envisioned at the outset of the initiative. Furthermore, initiative research has led to press releases, presentations to the Ministry of Health, and provided the scientific evidence to support the expansion of national clean air laws. On April 26, 2011, the Hungarian Parliament passed a law that banned smoking in offices and indoor establishments. With 271 votes for, 37 against, and 14 abstentions, the new legislation represented a milestone in the Hungarian fight for tobacco control [21]. While our team cannot take any definitive credit for the legislation, we believe that research from the initiative contributed significantly to creating the scientific foundation that led to national tobacco control policy success. Moreover, several members of the scientific team have engaged in the political process through advocacy and serving in an advisory role to the Minister of Health. The international team for this initiative was brought together with special attention to the tobacco research needs within Hungary, the desire among American scholars to expand their tobacco research to the CEE region, and reflects the scientific and organizational strengths of both countries. We created the necessary foundation for research and capacity building, disseminated research findings to the scientific community, translated the findings into policies and programs to reduce tobacco use, and created a strategy for ongoing scientific collaboration for sustainability of high quality tobacco research in Hungary. The original intent of the NIH initiative appears to have worked. From 2007 to 2011, LMIC scientists co-authored 22.7% of the articles appearing in Tobacco Control (up from 7.2% in the preceding 15 years), and lead authorship more than tripled from 4% to 13.7%. The Hungarian-American scientists in this initiative have published 33 articles in Hungarian and English language

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journals; two books with contributions by Hungarian and American investigators (in addition to this volume); and 110 oral or poster presentations at scientific meetings, such as the Society for Research on Nicotine and Tobacco, the World Conference on Tobacco or Health and the American Public Health Association. Funded scientists have improved their research competencies across several dimensions (e.g. design, analysis, translation of findings to action) and have made important scientific contributions in understanding the factors that contribute to tobacco prevention, cessation, and exposure to secondhand smoke in Hungary. See Appendix I for a summary of scientific activities. Our goal at the outset of this initiative was to develop and test a capacity-building model that would enhance scientific productivity and effective tobacco control in LMICs. In one respect, Hungary was a test case for the new model, but over the course of the initiative, the model evolved to the point that the Hungarians and Americans are essentially working as partners on many of the projects reported here. We have all learned from one another. As a result the studies carried out under the initiative – along with the networking, capacity-building, and policy advocacy – go well beyond what any of us envisioned at the outset of the initiative. In July 2012, U.S. and Hungarians were awarded a new grant under the NIH International Tobacco and Health Research and Capacity Building Program (TW-11-003) to work alongside one another as co-leaders and mentors to address the high rates of tobacco use in neighboring Romania. This “Building Capacity for Tobacco Research in Romania” will employ many of the best features of the Hungarian projects and elevates the Hungarian scientists to scientific leaders to build capacity for tobacco research and control in Central and Eastern Europe.

References 1. The World Health Organization Tobacco Fact Sheet, May 2011. Publically available at: http://www.wpro.who.int/mediacentre/factsheets/fs_201203_tobacco/en/index.html 2. Warner KE, Tam J, Koltun SM. Growth in Tobacco Control publications by authors from low- and middle-income countries Tob Control doi:10.1136/tobaccocontrol-2012-050762. 3. The World Health Organization. Noncommunicable diseases. Available at http://www. wpro.who.int/mediacentre/factsheets/fs_20120926e/en/http://www.wpro.who.int/mediace ntre/factsheets/fs_20120926e/en/ 4. International Tobacco and Health Research and Capacity Building Program. RFA-TW02-005. Release Date: June 25, 2001. Publically available at: http://grants.nih.gov/grants/ guide/rfa-files/rfa-tw-02-005.html 5. Hungary Smoking Prevalence Tobacco Economy. World Health Organization. 2002. Innen van az adat, de ez régi, s akkor ott kell ez a datum!!! Publically available at: http://www.who.int/tobacco/media/en/Hungary.pdf 6. The World Bank: Country and Lending Groups. Publically available at: http://data. worldbank.org/about/country-classifications/country-and-lending-groups#Europe_and_ Central_Asia

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7. Levi F, Lucchini F, Negri E, Zatonski W, Boyle P, La Vecchia C. Trends in cancer mortality in the European Union and accession countries, 1980-2000. Ann Oncol 2004 September 1;15(9):1425-31. 8. Tobacco use among youth: a cross country comparison. Tob Control 2002 September;11(3):252-70. 9. Nyari TA, Heredi K, Parker L. Addictive behaviour of adolescents in secondary schools in Hungary 3. Eur Addict Res 2005;11(1):38-43. 10. Piko B. Smoking in adolescence do attitudes matter? Addict Behav 2001 March;26(2): 201-17. 11. Piko BF. Does knowledge count? Attitudes toward smoking among medical, nursing, and pharmacy students in Hungary. J Community Health 2002 August;27(4):269-76. 12. Nagy K, Barabas K, Nyari T. Attitudes of Hungarian healthcare professional students to tobacco and alcohol. Eur J Dent Educ 2004 February;8 Suppl 4:32-5. 13. Nagy G BJBJ. The smoking habits of dentists and dental students in Hungary. Special Edition of the Hungarian Dentist, 24-29. 2002. Ref Type: Generic 14. Hovell M, Roussos S, Hill L, Johnson NW, Squier C, Gyenes M. Engineering clinician leadership and success in tobacco control: recommendations for policy and practice in Hungary and Central Europe. European Journal of Dental Education 2004;8(s4):51-60. 15. Szilagyi T. Peer education of tobacco issues in Hungarian communities of Roma and socially disadvantaged children 6. Cent Eur J Public Health 2002 September;10(3):117-20. 16. Szilagyi T, Chapman S. Hungry for Hungary: examples of tobacco industry's expansionism. Cent Eur J Public Health 2003 March;11(1):38-43. 17. WHO Framework Convention on Tobacco Control. Publically available at http://www. who.int/fctc/en/. 18. Foley KL, Balázs, P. 2010. Social will for tobacco control among the Hungarian public health workforce. Central European Journal of Public Health. 18(1):25-30. 19. Bologna Process: European Higher Education Area. Publically available at: http://www. ehea.info/ 20. The National Lung Screening Trial Research Team. 2011. Reduced lung-cancer mortality with low-dose computed tomographic screening. N Engl J Med365:394-409. Publically available at: http://www.nejm.org/doi/full/10.1056/NEJMoa1102873 21. Origo News Portal. Elfogadta az országgyûlés a dohányzás szigorítását (The Hungarian Parliament Tightened the Smoking Laws). 26 April 2011. http://www.origo.hu/itthon/ 20110426-elfogadta-az-orszaggyules-a-dohanyzas-szigoritasat.html.

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Health status of expectant mothers based on an epidemiological survey in Roma and non-Roma populations Péter Balázs

Summary One of the four factors defining well-being is that persons both are social and biological creatures. Maintaining the strictest rules of the research ethics, we can reject or support the biomedical significance of ethnicity on the health status. Related to the topic of this study, it means that collecting self-admitted data of ethnicity – despite the fact that it was neglected for different reasons in the last 20 years – is pre-eminently important for improving the poor health status of Hungary’s Roma communities.

Specific survey problems targeting the Roma population It is necessary for all descriptive, analytical or experimental epidemiological studies to gain reliable data about the relevant population. In Hungary, there are some data that are “sensitive” in legal terms and protected by legislation, such as the affiliation to a specific nationality or ethnicity. While starting a research related to this topic we experienced a number of ideological and ethical problems due to including self-identified ethnicity in research, which has been widely discussed over the past two decades since the fall of Communism in this country. Therefore, it is necessary to clear these problems prior to the presentation of our scientific results. Men are biological and social creatures alike thus ethnic diversity – provided it is relevant in biomedical terms – must also be considered in targeted public health programs and personal health care respectively. The basic concept of four main determinants of health, generally accepted today, goes back to the Marc Lalonde report titled as A new perspective on the health of Canadians published in 1974 [1]. One of these four determinants is of biological nature. Nevertheless, the Lalonde report emphasized that changing social determinants such as behavioural patterns contribute significantly to the improving of health status among individuals and populations. Finally, aiming to improve the health status of high-risk populations who experience greater health disparities should be a priority of all public health programmes.

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Biological determinants and the social affiliation to a specific ethnic community represent a double-edged problem. From point of view of social sciences, there is no doubt that individual self-identification must be acknowledged as a priority. In human biology (such as genetics) we cannot neglect the facts of natural sciences even in spite of individual social decisions. Nevertheless, dividing lines are not always so clear visible in this regard. The picture is rapidly changing if we face the dilemma of priorities while concerning the impact of deep poverty and/or ethnicity in public health issues. It is unquestionable that exploring genetic disorders, which occur typically in Roma communities, we can use only anthropological evidence for ethnic identification. On the other hand, there are many overlapping impacts and interchangeable cause-effect relations if ethnicity is coupled with social disadvantages or even discrimination. In Europe, the United Kingdom traditionally the cradle of liberalism, arranged the first census exploring ethnicity in 1991. Data of this census and those of the later ones are accessible electronically [2]. Prior to the census, it was taken into account many factors that may correlate with the individuals’ ethnic identity. Thus the questionnaire of the census provided more options, such as the country where the persons or his/her parents were borne, the country the immigrants came from, ideological national identity, first language spoken usually in the family, religious affiliation, and finally anthropological characteristics such as skin colour or features of distinct races. From 2001, the census has allowed „mixed race” self-identity. In a basic sociological study published in Hungary in 2001, there were three options of scientific surveys proposed for defining ethnicity of the Central-European Roma population [3]. Self-identification is a typical first choice of social sciences. This way, individuals may decide on their own whether they are Roma or non-Roma (and whether or not to self-report). The second option is a community classification done by local civil servants or non-medical professionals (e.g. teachers or social workers) in day-to-day contact with Roma people. This outcome will also be of social nature. Finally, the third option is based on individual ethnic qualifications of assistants distributing and collecting the questionnaires. In the domestic public health literature, the most comprehensive metaanalysis about the health status of the Roma minority listed all possible ways of identification without having decided for a specific methodological option [4]. Additionally, this study emphasized that it is an easy simplification to use the rather complex phenomenon of ethnicity as a distinct independent variable of the analytical epidemiology. The latest Hungarian studies applied a new approach while exploring Roma communities [5, 6]. The basic idea of this model was built on the existing Roma segregation named as „Roma settlements.” It was assumed that in these settlements there are living only Roma „practically without exceptions.”

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HEALTH STATUS OD EXPECTANT ROMA AND NON-ROMA MOTHERS

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This method is applied also in other Central-European countries [7]. In biomedically dominated research programmes, scientists endeavoured to apply more consistent criteria. Collecting data in obstetrical wards about anthropometric features of delivered women and their babies, only those mothers were taken up in the sample whose first language was one of the distinct Roma dialects [8]. However, similar studies used also the principle of self-identification [9]. The sampling method of the greatest domestic study also used the principle of the first language. About 20% of Roma in Hungary reported a special “Gipsy dialect”, which was recorded in hospitals. As a result, the last retrospective and nationwide study about Roma babies born in 1973-1983 was based on these obstetrical records [10]. The actual Hungarian legislation qualified all data as sensitive, which are related to „racial origin and national affiliation” [11]. Nevertheless, these data can be asked and collected by written consent of the individuals if the data remain anonymous. Having corrected the past legal term, the new legislation changed the definition of Roma ethnicity to nationality independent of the fact that nationality was earlier determined to a minority backed up only by a national state anywhere in the world [12]. Compared with all other nationalities in Hungary, Roma show distinct anthropologic features thus they can be more or less exactly identified in the day-to-day life. Paradoxically, even this phenomenon makes “sensitive” the problems related to the choice between self- and external identification [13, 14]. Thus, external identification can be blamed as stigmatisation and racism against all appearances. In specific social circumstances, this type of sensitivity can be amplified by defensive Roma strategies as well. They will reject answering the self-identified ethnicity if they suspect any kind of disadvantage by this decision. Nevertheless, this strategy generates problems when confronted with the need to draw valid conclusions from the data gathered. The latest trends indicate new self-consciousness in this regard as demonstrated by a domestic Roma Internet portal encouraging ethnic communities to take part actively in the census 2011 [15]. Roma activists suggested that “as many people as possible should answer the question of nationality” thus “the outcome will reflect more exactly the real proportion of Roma within the whole population.” As a result, data will support initiatives “at local and national level to prepare future political changes.” Data of the census 2011 about national minorities are not available yet, thus we can only rely on estimates published so far in the relevant literature. In 1991, according to the rough estimates, the Roma’s population size was 400,000 to 600,000, i.e. 4-6% of the total population [16]. In 2001, 196,046 persons self-identified as Roma, which is thought to be an underrepresentation of the actual Roma population living in Hungary. The latest calculation published in 2003 estimates the proportion of the Roma population to be fourtimes higher (800,000) [17]. The lack of reliable statistics is also obvious in the

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European Union (EU) as it is documented in „An EU Framework for National Roma Integration Strategies up to 2020” published April 5, 2012 as “Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions [18]. Chapter 8 „Measuring progress: putting in place a robust monitoring system” emphasizes that „At present, it is difficult to obtain accurate, detailed and complete data on the situation of Roma in the Member States and to identify concrete measures put in place to tackle Roma exclusion and discrimination. It is not possible to assess whether such measures have given the expected results. It is therefore important to collect reliable data”. The table (last update September 14, 2010) titled as “Document prepared by the Council of Europe Roma and Travellers Division” attached to the Communication contains also Hungary’s demographic data [19]. The country’s total population is 9,930,915 (July 2009). The number of Roma (190,046) was obviously taken over from the census 2001. In the same table, three columns show minimum, maximum, and average estimates of the EU member states’ Roma population. As for Hungary, the minimum-maximum range is 400,000 – 1,000,000, and the average is estimated 700,000. Based on these data, Roma should represent 7.05% of Hungary’s total population. In our present study, lacking relevant data at the outset, we were not able to calculate ethnicity-related fertility and reproductive rates in the target region. However, based on our representative sample, we tested three hypotheses: First if there are significant maternal health differences between Roma and non-Roma sub-samples, second if deep poverty levels explains the differences in the ethnic sub-samples, third if low birth weight (