Palliative care research in southern and central Africa - European ...

Res e a rc h

www.ejp c . e u . c o m

Palliative care research in southern and central Africa Our series on palliative care research in Africa, launched in the previous issue with an overview of current challenges and opportunities, continues with the southern and central regions of the continent. Liz Gwyther, Charmaine Blanchard, Eve Namisango, Faith Mwangi-Powell and Richard A Powell report outhern and central Africa cover 2.69 million km2 (1.6 million sq mi) and 6.6 million km2 (4.1 million sq mi), respectively. Combined, their 59 million and 134 million inhabitants constitute 18% of the continent’s total population, distributed across 14 states: ● Five in southern Africa – Botswana, Lesotho, Namibia, South Africa and Swaziland ● Nine in central Africa – Angola, Cameroon, Central African Republic, Chad, Congo, Democratic Republic of Congo, Equatorial Guinea, Gabon and São Tomé and Principe.1

S

Disease burden In Africa, the greatest burden of disease is due to infectious diseases. While HIV/AIDS prevalence rates in central Africa are comparatively low, southern Africa has the highest HIV infection rates on the continent. In central Africa, in 2011, the HIV infection

Key points ● The 14 countries of southern and central Africa face a heavy burden of infectious and non-communicable diseases, weak healthcare systems, poor access to opioids and a lack of inclusion of palliative care in healthcare structures and policies. ● Palliative care services are generally more advanced in southern than in central Africa. ● Palliative care research is extremely limited in central Africa and slightly more developed in southern Africa. The bulk of the research is conducted in South Africa, mainly at the University of Cape Town and the Chris Hani Baragwanath Hospital in Soweto. ● The primary challenge is to develop research competency and reach a critical mass of research personnel. Training and mentorship will be crucial factors to achieve this.

242

HOSPICE PALLIATIVE CARE ASSOCIATION OF SOUTH AFRICA

■ Nurse and carer from Highway Hospice visiting a patient at home in Durban, South Africa

rate among adults aged 15–49 years ranged from 1% in São Tomé and Principe to 5% in Gabon.2 In southern Africa, HIV infection rates were over 15% in four out of five countries (Botswana, Lesotho, South Africa and Swaziland), Swaziland hitting the highest rate at 26%.2 Tuberculosis (TB) is another major problem in Africa, accounting for 26% (2.6 million) of all cases worldwide,3 the highest incidences being recorded in southern Africa. Table 14 shows TB incidences in various countries of central and southern Africa in 2011. There is a high incidence of TB and HIV co-infection. In southern Africa, TB is the most common cause of morbidity and the leading cause of mortality in people living with HIV/AIDS. The advent of multidrugresistant TB (MDR-TB) is especially evident in South Africa; together, South Africa, India, China and the Russian Federation account for almost 60% of all MDR-TB cases worldwide.3 Some specialists, including South African ones, have called for palliative care to be integrated into existing TB care in order to enhance control programmes.5,6 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(5)

Copyright © Hayward Medical Communications 2013. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact [email protected]

Researc h

www.ejpc.eu.com

Non-communicable diseases (NCDs), especially cancer, represent a growing burden. Most of the global cancer burden – estimated at 12.7 million new cases and 7.6 million deaths in 2008 – now occurs in developing countries.7 NCDs are expected to increase due to demographic and epidemiological transitions;8 some data predict a rising burden of chronic NCDs (such as hypertension and diabetes) in countries such as Cameroon9 and South Africa.10 In order to identify risk factors associated with NCDs and design effective interventions, there is a need to develop and strengthen nationally representative population-based surveys by country, and health information systems.11

Healthcare systems Southern and central Africa face the challenges of weak, often dysfunctional and inadequately funded healthcare systems. In 2009, although the number had decreased from 24 in 2000, there were still 17 African countries, including four in central and one in southern Africa, that were spending less than 5% of their gross domestic product on health.12 Table 213 shows the annual health expenditure per capita in selected countries in the two African regions compared with European countries and the USA. In their 2010 case study, Bryan et al14 identified three mutually reinforcing primary barriers to the delivery of preventative healthcare, diagnostic services and effective treatment in sub-Saharan Africa: ● Insufficient access ● Acute shortage of healthcare workers ● Systemic weaknesses (lack of money, poor work management practices, staff mindsets and behaviours). To improve healthcare delivery in any country, the quality of governance needs to be addressed, as it has been shown to be an important structural determinant of healthcare system performance.15 Moreover, the emphasis on vertical disease programmes (for example, programmes focused on HIV) has resulted in systemic imbalances in relation to other critical public health problems16 and further constraints on over-burdened healthcare systems. One of the systemic barriers to palliative care in central and southern Africa is access to essential pain medication. The USA-based Pain & Policy Studies Group (University of EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(5)

Table 1. Tuberculosis incidence per 100,000 people in countries of central and southern Africa in 2011 Central Africa Gabon Central African Republic Congo Democratic Republic of Congo Angola Cameroon Equatorial Guinea Chad São Tomé and Principe Southern Africa Swaziland South Africa Namibia Lesotho Botswana

450 400 387 327 310 243 202 151 94 1,317 993 723 632 455

Source: The World Bank4

Table 2. Annual health expenditure per capita in different regions of the world in 2011 Health expenditure per capita (in US$)

Health expenditure as a % of GDP

432 68 20 35 283 689

5.1% 5.2% 8.5% 6.6% 5.3% 8.5%

4,875 2,864 3,609 8,608

11.1% 10.8% 9.3% 17.9%

Southern and central Africa Botswana Cameroon Democratic Republic of Congo Mozambique Namibia South Africa Europe Germany Greece UK USA GDP = gross domestic product; Source: The World Bank13

Wisconsin-Madison) reports very low morphine consumption in Africa, with only South Africa featuring a consumption above the global mean (see Figure 1).17 In 2010, the reported opioid consumption in South Africa was 10.9 mg/capita, compared with 40–60 mg/capita in developed countries such as the UK, the USA and Canada. The African Palliative Care Association (APCA) has facilitated regional workshops on opioid availability in southern Africa (Namibia), among other regions, to address the problem.18 However, irrespective of their positive outcomes, such initiatives 243


Res e a rc h 12 10

6 4 2

History and current status of palliative care

0 So uth Se Afric ych a e Na lles mi b Za ia m Ug bia a Tan nda zan ia Ca Keny p a Ma e Ver d d Mo aga e zam sca biq r Alg ue De Ma eria mo u cra Ca ritiu me s tic r Re pu G oon bli h c o an fC a Zim ong ba o bw e Ma li Ch ad Bo Togo tsw an Be a n E in Ivo ritre ry a Co a An st go Ma la law i

African mean, 0.7058 mg Global mean, 5.9912 mg

the accessibility of care, there remains a need to develop a public health approach integrating palliative care into national health systems on the ground.21

■ Figure 1.

Consumption of morphine in the African region in 2010

Status of palliative care research

■ Research students

and lecturers at the University of Cape Town, South Africa, in 2010

UNIVERSITY OF CAPE TOWN

Palliative care services are more advanced in southern than in central Africa. In their update on global palliative care development, first released in 2011 through the Worldwide Palliative Care Alliance, Lynch et al highlighted significant advances in Africa over the preceding five years.20 South Africa was identified as achieving preliminary integration of palliative care with existing healthcare services and having some of the most advanced services provided by non-govermental organisations on the continent. Hospice services started in South Africa in the 1980s and the Hospice Palliative Care Association of South Africa was founded in 1987. National associations have since been established in 14 countries across Africa, one of the most recent being created in Cameroon in 2009. The APCA has been active across southern and central Africa in fostering palliative care, supporting country policy development, promoting access to essential palliative care medication and providing training in palliative care. This work has proved successful, with the situation analyses conducted in a number of countries – Mozambique and Swaziland, among others – resulting in the adoption of stand-alone palliative care strategies, policies and guidelines. However, in order to increase

8

244

The WHO public health strategy (PHS) for palliative care wants to see new knowledge and skills translated into evidence-based, cost-effective interventions that can reach everyone. It aims to increase access to palliative care services through their integration, by governments, at all levels of the healthcare systems and through their ownership by the community. It is based on four pillars: ● Appropriate policies ● Adequate drug availability ● Education of policy-makers, healthcare workers and the public ● Implementation of palliative care services at all levels of society.22 A recent call to incorporate research as a fifth pillar into the WHO PHS has focused attention on the need to generate methodologically rigorous evidence in order to improve care using locally validated, patient-reported outcome measures.23 Palliative care research is extremely limited in central Africa and slightly more developed in southern Africa, where a few studies have been undertaken in Botswana,24 Malawi25 and Namibia.26 The bulk of the research in the region is conducted in South Africa. The University of Cape Town (UCT) has been offering postgraduate training programmes, including a research-based Master’s degree programme, with funding from the now defunct Diana, Princess of Wales Memorial Fund since 2000.27 The country has been central to the development of the APCA African Palliative Outcome Scale.28,29 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(5)


REPRODUCED WITH PERMISSION AND ADAPTED FROM PAIN & POLICY STUDIES GROUP, 201217

mg/capita

cannot be pursued in isolation. Indeed, a recent review of policies and opportunities for scaling up palliative care in a number of southern-African countries found an overall lack of inclusion of palliative care in policy and planning documents.19


Researc h

www.ejpc.eu.com

■ A group of traditional

HOSPICE PALLIATIVE CARE ASSOCIATION OF SOUTH AFRICA

healers attended a training course in palliative care at Msunduzi Hospice in KwaZulu Natal, South Africa

As part of the ENCOMPASS study,30 and working with international partners (particularly King’s College London in the UK) who have been critically important in the development of palliative care research in the region, a number of formative works have been published; topics include the prevalence and burden of symptoms among cancer31 and HIV patients;32 the intensity and correlates of multidimensional problems for HIV patients;33 and patient quality of life34 and information needs.35 Methodologically, this has also resulted in the development of the ‘Spirit 8’ tool to measure spiritual well-being36 and the examination of the structure of the Missoula-VITAS Quality of Life Index.37 Dissertations written as part of the UCT research programme have covered a range of topics, with published work including the perceived relevance of advance care planning38 and traditional healers’ views of the required process for a ‘good death’ among Xhosa patients.39 Another crucial site of research in South Africa is the Gauteng Centre for Excellence in Palliative Care at Chris Hani Baragwanath Hospital in Soweto, Johannesburg. Important studies there have included the costing of palliative care services,40 a comparison of the DN4 and the Brief Peripheral Neuropathy screening tool41 and a double-blind, randomised controlled crossover trial EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(5)

comparing amitriptyline and placebo for the treatment of HIV neuropathy.42 This trial was important in establishing that performing an investigator-driven clinical trial is possible in southern Africa.

Palliative care research: opportunities and challenges Southern and central Africa present unique challenges to researchers in terms of disease profiles, diversity of services, linguistic variations and limited resources. Moreover, there is a deficit in research expertise and personnel. Those involved in service delivery are often overwhelmed by the burden of care and research becomes a low priority, despite the fact that it would inform clinical, educational and advocacy programmes. The primary challenge is to develop research competency and reach a critical mass of research personnel to sustain the work achieved to date and take it further. This implies training and mentorship by those who are competent in research, from established institutions in Africa and internationally. Small collaborative studies have been important in building research skills, but these should be replicated in other centres to boost confidence to conduct larger projects. In South Africa, there have been a number of opportunities for research across disciplines. At the University of the Witwatersrand in 245


Res e a rc h


Johannesburg, collaborations have taken place between the discipines of palliative care and physiology, pharmacology and public health. Palliative care research is also being conducted by family medicine registrars, and it is encouraging that family medicine specialists are required to develop competencies in palliative care as part of their training. Finally, the establishment of the African Palliative Care Research Network is an important step forward in the development of palliative care research in southern and central Africa, garnering the support of experienced researchers from Europe, the USA and other African countries.

Conclusion Palliative care research has taken its first steps in southern Africa; this is not yet the case in central Africa. There are real challenges: researchers are also busy full-time clinicians and funding is not readily accessible. However, training and mentorship should assist in developing palliative care research further. This article is part of a series on palliative care research in Africa. An overview was published in the European Journal of Palliative Care Vol 20, No 4. The next issues will cover eastern, western and northern Africa. Declaration of interest The authors declare that there is no conflict of interest. References 1. Population Reference Bureau. 2012 World Population Data Sheet. Washington DC: Population Reference Bureau, 2012. 2. Joint United Nations Programme on HIV/AIDS. UNAIDS Report on the Global AIDS Epidemic, 2012. Geneva: UNAIDS, 2012. 3. World Health Organization. Global Tuberculosis Report. Geneva: WHO, 2012. 4. The World Bank. Incidence of tuberculosis (per 100,000 people). http://data.worldbank.org/indicator/SH.TBS.INCD (last accessed 25/06/2013) 5. Connor S, Foley K, Harding R, Jaramillo E. Declaration on palliative care and MDR/XDR-TB. Int J Tuberc Lung Dis 2012; 16: 712–713. 6. Harding R, Foley KM, Connor SR, Jaramillo E. Palliative and end-of-life care in the global response to multidrug-resistant tuberculosis. Lancet Infect Dis 2012; 12: 643–646. 7. Ferlay J, Shin HR, Bray F et al. Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. Int J Cancer 2010; 127: 2893–2917. 8. Parkin DM. The global health burden of infection-associated cancers in the year 2002. Int J Cancer 2006; 118: 3030–3044. 9. Echouffo-Tcheugui JB, Kengne AP. Chronic non-communicable diseases in Cameroon - burden, determinants and current policies. Global Health 2011; 7: 44. 10. Mayosi BM, Flisher AJ, Lalloo UG et al. The burden of non-communicable diseases in South Africa. Lancet 2009; 374: 934–947. 11. Dalal S, Beunza JJ, Volmink J et al. Non-communicable diseases in subSaharan Africa: what we know now. Int J Epidemiol 2011; 40: 885–901. 12. Sambo LG, Kirigia JM, Orem JN. Health financing in the African region: 2000–2009 data analysis. Int Arch Med 2013; 6: 10. 13. The World Bank. Health expenditure per capita (current US$). http://data.worldbank.org/indicator/SH.XPD.PCAP (accessed 25/06/2013) 14. Bryan L, Conway M, Keesmaat T, McKenna S, Richardson B. Strengthening sub-Saharan Africa’s health systems: A practical approach. Insights and Publications, McKinsey & Company, June 2010. www.mckinsey.com/ insights/health_systems_and_services/strengthening_sub-saharan_africas_ health_systems_a_practical_approach (accessed 25/06/2013) 15. Olafsdottir AE, Reidpath DD, Pokhrel S, Allotey P. Health systems performance in sub-Saharan Africa: governance, outcome and equity. BMC Public Health 2011; 11: 237. 16. Lemoine M, Girard PM, Thursz M, Raguin G. In the shadow of HIV/AIDS: forgotten diseases in sub-Saharan Africa: global health issues and funding agency responsibilities. J Public Health Policy 2012; 33: 430–438. 17. Pain & Policies Study Group, WHO Regional Office for Africa (AFRO), AFRO mean opioid consumption, 2010. www.painpolicy.wisc.edu/who-regionaloffice-africa-afro (last accessed 26/06/2013) 18. Powell RA, Kaye RM, Ddungu H, Mwangi-Powell F. Advancing drug availability – experiences from Africa. J Pain Symptom Manage 2010; 40: 9–12. 19. African Palliative Care Association. Review of Current Policies and Opportunities for Scaling up Care. Kampala, Uganda: African Palliative Care

246

Association, 2012. 20. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013; 45: 1094–1106. 21. Mwangi-Powell FN, Powell RA, Harding R. Models of delivering palliative and end-of-life care in sub-Saharan Africa: a narrative review of the evidence. Curr Opin Support Palliat Care 2013; 7: 223–228. 22. Stjernswärd J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manage 2007; 33: 486–493. 23. Harding R, Selman L, Powell RA et al. Research into palliative care in sub-Saharan Africa. Lancet Oncol 2013; 14: e183–e188. 24. Lazenby M, Ma T, Moffat HJ et al. Influences on place of death in Botswana. Palliat Support Care 2010; 8: 177–185. 25. Thumbs A, Vigna L, Bates J, Fullerton L, Kushner AL. Improving palliative treatment of patients with non-operable cancer of the oesophagus: training doctors and nurses in the use of self-expanding metal stents (SEMS) in Malawi. Malawi Med J 2012; 24: 5–7. 26. Powell RA, Namisango E, Gikaara N et al. Public priorities and preferences for end-of-life care in Namibia. J Pain Symptom Manage 2013 [in press]. 27. Gwyther L, Rawlinson F. Palliative medicine teaching program at the University of Cape Town: integrating palliative care principles into practice. J Pain Symptom Manage 2007; 33: 558–562. 28. Powell RA, Downing J, Harding R, Mwangi-Powell F, Connor S. Development of the APCA African Palliative Outcome Scale. J Pain Symptom Manage 2007; 33: 229–232. 29. Harding R, Selman L, Agupio G et al. Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health Qual Life Outcomes 2010; 8: 10. 30. Harding R, Gwyther L, Mwangi-Powell F, Powell RA, Dinat N. How can we improve palliative care patient outcomes in low- and middle-income countries? Successful outcomes research in sub-Saharan Africa. J Pain Symptom Manage 2010; 40: 23–26. 31. Harding R, Selman L, Agupio G et al. The prevalence and burden of symptoms amongst cancer patients attending palliative care in two African countries. Eur J Cancer 2011; 47: 51–56. 32. Harding R, Selman L, Agupio G et al. Prevalence, burden, and correlates of physical and psychological symptoms among HIV palliative care patients in sub-Saharan Africa: an international multicenter study. J Pain Symptom Manage 2012; 44: 1–9. 33. Harding R, Selman L, Agupio G et al. Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa. Sex Transm Infect 2012; 88: 607–611. 34. Selman LE, Higginson IJ, Agupio G et al. Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study. Health Qual Life Outcomes 2011; 9: 21. 35. Selman L, Higginson IJ, Agupio G et al. Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study. BMJ 2009; 338: b1326. 36. Selman L, Siegert RJ, Higginson IJ et al. The “Spirit 8” successfully captured spiritual well-being in African palliative care: factor and Rasch analysis. J Clin Epidemiol 2012; 65: 434–443. 37. Selman L, Siegert RJ, Higginson IJ et al. The MVQOLI successfully captured quality of life in African palliative care: a factor analysis. J Clin Epidemiol 2011; 64: 913–924. 38. Stanford J, Sandberg DM, Gwyther L, Harding R. Conversations worth having: the perceived relevance of advance care planning among teachers, hospice staff, and pastors in Knysna, South Africa. J Palliat Med 2013 [Epub ahead of print]. 39. Graham N, Gwyther L, Tiso T, Harding R. Traditional healers’ views of the required processes for a “good death” among Xhosa patients pre- and postdeath. J Pain Symptom Manage 2012 [Epub ahead of print]. 40. Hongoro C, Dinat N. A cost analysis of a hospital-based palliative care outreach program: implications for expanding public sector palliative care in South Africa. J Pain Symptom Manage 2011; 41: 1015–1024. 41. Dinat N, Kamerman P, Hatta N, Marinda E, Moch S. Comparing signs and symptoms of the DN4 and the Brief Peripheral Neuropathy screening tool in HIV neuropathy in South Africa. Eur J Pain Suppl 2010; 4: 66. 42. Dinat N, Hatta N. A double blind, randomised controlled crossover trial comparing amitriptyline and placebo for the treatment of moderate to severe HIV neuropathy. Eur J Pain Suppl 2010; 4: 137–138.

Liz Gwyther, Chief Executive Officer, Hospice Palliative Care Association of South Africa and Senior Lecturer, Division of Family Medicine, School of Public Health, University of Cape Town, South Africa; Charmaine Blanchard, Director, Wits Palliative Care, Gauteng Centre of Excellence for Palliative Care, Chris Hani Baragwanath Hospital, Soweto, Johannesburg, South Africa; Eve Namisango, Monitoring & Evaluation and Research Officer, African Palliative Care Association, Kampala, Uganda; Faith Mwangi-Powell, Senior Programme Officer, Open Society Foundations, New York, USA; Richard A Powell, Deputy Director Research, HealthCare Chaplaincy, New York, USA EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(5)
