Eastern Africa covers 6.38 million km2

Transcription

1 Palliative care research in eastern Africa Our series on African palliative care research continues with eastern Africa, where current conditions and future challenges are described by Eve Namisango, Richard A Powell, Helen Kariuki, Richard Harding, Emmanuel Luyirika and Faith Mwangi-Powell Key points Eastern Africa covers 6.38 million km2 (3.96 million sq mi). Its 342 million inhabitants constitute 32% of the continent s total population and are distributed across 19 states: Burundi, Comoros, Djibouti, Eritrea, Ethiopia (which has the largest population in the region with 87 million inhabitants), Kenya, Madagascar, Malawi, Mauritius, Mayotte, Mozambique, Reunion, Rwanda, Seychelles, Somalia, Uganda, Tanzania, Zambia and Zimbabwe. 1 Disease burden After southern Africa, the region is the second most affected by the HIV pandemic on the continent, with infection rates considered moderate-to-high. HIV prevalence in adults (age years) ranges from <0.1% in Comoros to 14.9% in Zimbabwe (see Table 1). 2 While HIV prevalence among the wider heterosexual population has been reducing over the last two decades (in Kenya it has declined from 14% to 5%), there are growing concerns regarding emerging at-risk In eastern Africa, access to palliative care is problematic; however, Rwanda and Mozambique are developing national palliative care policies; Kenya and Uganda have achieved a degree of integration of palliative care into mainstream health services; and Tanzania is achieving a significant service scale-up. In recent years, the volume of research publications from eastern Africa has increased considerably. Most of that research is being undertaken in Kenya, Uganda, Tanzania and Zambia. Easing the clinical workload of professionals interested in research, increasing funding and providing mentorship and training on research methodology will go a long way towards making palliative care research a reality in eastern Africa. The son of a Somali patient receives instructions from a nurse at Nairobi Hospice in Kenya on morphine administration and treatment for his father populations, including drug users, prisoners and soldiers. Tuberculosis (TB) is also a problem. 3 According to the WHO, there were, in 2011, an estimated 8.7 million new cases (13% combined with HIV) and 1.4 million people dying from TB (including approximately one million among HIV-negative and 430,000 among HIV-positive individuals). 4 High TB incidences have been recorded in several eastern African countries (see Table 2), 4 with rates of more than 440 per 100,000 people in Zambia, Zimbabwe and Djibouti. TB is a potentially life-threatening condition from diagnosis, 5 particularly in its severest forms, multidrug-resistant (MDR) and extensively drug-resistant (XDR) TB. In 2010, the WHO estimated that there were 650,000 cases of MDR-TB in the region, with at least 150,000 resultant deaths occurring annually. 2 In Somalia, a 2011 survey reported MDR-TB among 5.2% and 40.8% of patients with new and previously treated TB, respectively some of the highest figures in the region. 6 The global average cure rate for patients with drug-resistant TB being only 53%, 7 there is an opportunity to address symptoms by systematically including effective palliative 300 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(6)

2 Researc h Table 1. Figures regarding the HIV epidemic in 13 eastern African countries in 2011 Country Estimated number of HIV prevalence HIV incidence Total number Number of adults adults and children among adults in adults of people (age 15 years) living with HIV (age years) (%) (age years) (%) receiving ART who need ART comoros <500 < <100 eritrea 23, ,245 10,000 ethiopia 79, , ,000 Kenya 1,600, , ,000 Madagascar 34, ,000 Malawi 910, , ,000 Mauritius 7, ,34 3,600 Mozambique 1,400, , ,000 rwanda 210, , ,000 Uganda 1,400, , ,000 Tanzania 1,600, , ,000 Zambia 970, , ,000 Zimbabwe 1,200, , ,000 art = antiretroviral therapy; the number of people receiving, and in need of, art is calculated according to the 2010 WHo eligibility criteria (cd4 cell count 350 cells/µl) adapted from: UNaidS, care services in existing TB treatment programmes. A service model is emerging that suggests managing MDR-TB using a homebased care approach. 8 Non-communicable diseases (NCDs), including cancer, diabetes, cardiovascular disease and chronic respiratory illness, are a growing challenge worldwide, accounting for 65% of all deaths. 9 Eighty per cent of these deaths occur in developing countries. 10 In Kenya, it has been estimated that there are 28,000 new cancer cases and 20,000 cancer deaths annually. 11 In Zimbabwe, between 1990 and 1997, the prevalence rate of hypertension reportedly increased from 1,000 to 4,000 per 100,000 people, and that of diabetes from 150 to 550 per 100,000 people. 12 In Malawi, NCD risk factors are a major public health problem, with at least one in four men smoking tobacco, one in five drinking alcohol excessively and at least one in four women being overweight. 13 These morbidity and mortality rates are in part explained by health systems not delivering on disease prevention, screening, diagnosis and treatment. Healthcare systems People-centred and integrated health services are critical in reaching universal health coverage. 14 Eastern African health systems, however, are generally weak, often dysfunctional, and poorly developed. Healthcare service provision is subsequently compromised due to insufficient access, Table 2. Incidence of tuberculosis per 100,000 people in 16 eastern African countries in 2011 Country Incidence djibouti 620 Zimbabwe 603 Zambia 444 Kenya 288 Somalia 266 ethiopia 258 Madagascar 238 Uganda 193 Malawi 191 Tanzania 169 Burundi 139 eritrea 97 rwanda 94 comoros 34 Seychelles 30 Mauritius 21 Source: World Bank, acute shortage of health workers and other systemic weaknesses. 15 Access to palliative care is problematic. This is in no small measure attributable to the fact that palliative care is not included in governmental policy and planning, 16,17 and partly also to the lack of access to affordable essential pain medication 18,19 despite the high need. 20 Some countries are addressing the problem: Rwanda 21 and Mozambique are EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(6) 301

3 making exemplary progress by developing stand-alone national palliative care policies. Kenya has introduced a cancer control strategy a potential entry point for palliative care into the mainstream healthcare system. Over the last decade, there has been progress regarding the integration of palliative care into mainstream healthcare services in Africa generally, but only a few countries have achieved a meaningful degree of integration; this is the case of Kenya and Uganda. Other countries have achieved a significant service scale-up; this is the case, for example, of Tanzania, which achieved this scale-up through a faith-based network. 25,26 History and current status of palliative care Palliative care started in Africa 35 years ago, when Island Hospice was founded in Harare, Zimbabwe, in May Today, although palliative care provision is inconsistent and often provided by isolated centres, positive developments exist. 23,24 A survey of hospice and palliative care services in Africa in 2006 found that 21 out of 47 countries (44.7%) had no identified hospice or palliative care activity and that only four (8.5%) could be classified as having palliative care services that were somewhat integrated with mainstream services; 17 figures were even poorer for children s services, with 81% of countries having no identified paediatric palliative care activity. 28 In contrast, a follow-up review undertaken by the World Palliative Care Alliance in 2011 showed that sub-saharan Africa has seen notable developments, with nine countries moving from group 1/2 (no known activity/capacity building) to group 3a (isolated provision). 22 After Zimbabwe, palliative care was next initiated in Kenya, where Nairobi Hospice, the first hospice in the country, was established in It started as a service addressing the needs of cancer patients; over time, it expanded its support to HIV-affected patients in the city and surrounding areas. In 1993, the first Ugandan hospice opened in Kampala, eventually providing 30 mg per day of reconstituted morphine for ten days at the cost of a loaf of bread. 29 Since 1990, national palliative care associations have been set up in Kenya, Mozambique, Rwanda, Tanzania and Uganda, and service provision has increased dr Michelle lango of Nairobi Hospice prepares to conduct a home visit in Huruma, a slum settlement on the outskirts of Nairobi, Kenya considerably. Today, there are 40 hospices and palliative care units in public or private hospitals in Kenya, up from 14 in 2007 when the Kenya Hospices and Palliative Care Association (KEPHCA) was founded. Status of palliative care research In recent years, the volume of peer-reviewed, data-based research publications from eastern Africa has increased considerably. In line with the recent mapping of palliative care integration, 22 the greatest output comes from those countries with the highest level of service integration, namely Kenya and Uganda. Tanzania and Zambia have also contributed to the palliative care literature. 25,30 The areas covered are wide-ranging, from patient care and end-of-life care 21,34 to palliative care guidelines and symptom management, 35,36 pain and pain management 31 and education. 37 In those four countries, palliative care education is being delivered at certificate or diploma level. However, except Uganda, no eastern African country is offering palliative care education at university level. Most of the training provided focuses primarily on patient care and there are few career pathways open in palliative care research, which means that there are no permanent, experienced and funded national research groups that can advance national research agendas. In Uganda, palliative care research has been conducted at Makerere University, with the African Palliative Care Association (APCA) closely involved. In Kenya, enthusiasm for 302 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(6)

4 Researc h palliative care research has recently been stimulated by collaborations between experienced researchers from abroad and local researchers at the University of Nairobi, with support from the APCA and KEHPCA. Eastern African governments are increasingly recognising palliative care as a core component of healthcare provision, with many care units opening under the umbrella of the ministries of health. This potentially creates government-supported research opportunities, with outcomes directed specifically at improving patient care. However, major challenges remain. A major one is that many palliative care practitioners are too busy with daily clinical care provision to patients and with running their units to make research a priority. Paediatric palliative care research is minimal, reflecting the fact that this discipline is relatively new in Africa, despite the huge need. A recent review found little evidence of paediatric palliative care research in Africa, 38 although some studies were identified in Uganda. 39,40 The review identified the lack of paediatric palliative care data as a significant weakness; however, a palliative care outcome scale for children in sub-saharan Africa, 41 which is currently being validated, will enable outcome studies to be conducted. To reflect the diverse, holistic needs of patients with advanced disease in eastern Africa, multiprofessional research needs to be conducted by appropriate staff. While a lot of attention has been paid to pain relief, which has been a particular success in Uganda, 42,43 research needs to be multidimensional. Evidence to underpin this comes from Uganda, where a study demonstrated that patients with advanced disease identify their spiritual needs as paramount. 44 Research also needs to cover issues of policy and clinical practice, 45 communication and information, 37 and embrace a range of methods, such as the recently completed randomised controlled trial for intervention studies. 46 Eastern Africa also needs more evidence to support home care and hospital-based palliative care. 47 Data are emerging from eastern Africa regarding the palliative care needs of people with an HIV diagnosis, 48 and how to integrate care for those living with HIV. 49 However, despite an aging African population, other NCDs are poorly investigated and research is yet to identify, for example, the palliative care dr Michelle lango of Nairobi Hospice in Kenya examines a face tumour on an elderly patient who cannot afford radiation treatment needs of people with MDR-TB. 50 There is more evidence regarding the needs and outcomes of HIV patients 51 and HIV care provision 52,53 than there is for other diseases such as cancer. 54 More work is also needed on the costeffectiveness of interventions. International collaborations within Africa (for example, via the African Palliative Care Research Network), with low- and middle-income countries in other parts of the world (such as the workshop on outcome measurement between India and Africa 55 ) and between African and high-income countries (such as the Europe Africa co-ordinating action on end-of-life care measurement 56 ) are excellent opportunities to share experiences. There are also ongoing efforts to enhance research capacity by integrating research into palliative care education. Research methods are taught in the palliative care curriculum at Hospice Africa Uganda, one of the leading training institutions of the continent. In 2012, the Makerere University Palliative Care Unit offered an advanced research school that attracted participants from across Africa. Conclusion In many eastern African countries, palliative care as a clinical and academic discipline is just being recognised, but in a few of them, services are increasingly integrated within mainstream facilities and new palliative care units are being established. Easing the clinical workload of palliative care professionals interested in conducting research, increasing funding and providing mentorship and training on research methodology will go a long way towards making palliative care research a reality in eastern Africa. EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(6) 303

5 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. Southern and central Africa have been covered in Vol 20 No 5. Next we will cover western and northern Africa. Declaration of interest The authors declare that there is no conflict of interest. References 1. Population Reference Bureau World Population Data Sheet. Washington DC: Population Reference Bureau, UNAIDS. Getting to Zero: HIV in Easter and Southern Africa. New York: UNAIDS, World Health Organization. Global Tuberculosis Report. Geneva: WHO, World Bank. Incidence of tuberculosis (per 100,000 people), (last accessed 22/08/2013) 5. 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: Sindani I, Fitzpatrick C, Falzon D et al. Multidrug-resistant tuberculosis, Somalia, Emerg Infect Dis 2013; 19: Espinal M, Farmer P. The Cambridge Declaration: towards clinical trials for drug-resistant tuberculosis. Int J Tuberc Lung Dis 2009; 13: Luyirika E, Nsobya H, Batamwita R et al. A home-based approach to managing multi-drug resistant tuberculosis in Uganda: a case report. AIDS Res Ther 2012; 9: World Health Organization. World Health Statistics Geneva: WHO, Hotez PJ, Daar AS. The CNCDs and the NTDs: blurring the lines dividing noncommunicable and communicable chronic disease. PloS Negl Trop Dis 2008; 2: e Kenya Network of Cancer Organisations. press.com/kenya-cancer-facts/ (last accessed 22/08/2013) 12. Mufunda J, Chatora R, Ndambakuwa Y et al. Prevalence of noncommunicable diseases in Zimbabwe: results from analysis of data from the National Central Registry and Urban Survey. Ethn Dis 2006; 16: Msyamboza KP, Ngwira B, Dzowela T et al. The burden of selected chronic non-communicable diseases and their risk factors in Malawi: nation-wide STEPS survey. Plos One 2011; 6: e World Health Organization. Health systems service delivery. healthsystems/topics/delivery/en/ (last accessed 22/08/2013) 15. Bryan L, Conway M, Keesmaat T, McKenna S, Richardson B. Strengthening sub-saharan Africa s health systems: a practical approach. McKinsey Insights and Publications, and_services/strengthening_sub-saharan_africas_health_systems_ a_practical_approach (last accessed 22/08/2013) 16. African Palliative Care Association (APCA). Palliative Care in Southern Africa Review of Legislation, Policy Documentation and Implementation Guidelines in ten Southern African Countries. Kampala: APCA, (last accessed 22/08/2013) 17. Wright M, Clark D. Hospice and Palliative Care in Africa: A Review of Developments and Challenges. Oxford: Oxford University Press, Harding R, Powell RA, Kiyange F, Downing J, Mwangi-Powell F. Provision of pain- and symptom-relieving drugs for HIV/AIDS in sub-saharan Africa. J Pain Symptom Manage 2010; 40: European Society for Medical Oncology (ESMO). First international survey on the availability of opioids for cancer pain management. (last accessed 22/08/2013) 20. Harding R, Simms V, Selman L. Pain Among HIV Outpatients Attending HIV Care and Support Facilities in Two East African Countries: Secondary Analysis of Data from a Public Health Evaluation Study. Chapel Hill, NC: MEASURE Evaluation, at_download/document (last accessed 22/08/2013) 21. Vogel L. Rwanda moving to provide good deaths for terminally ill. CMAJ 2011; 183: E1053 E Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013; 45: Powell RA, Mwangi-Powell FN, Kiyange F, Radbruch L, Harding R. Palliative care development in Africa: how we can provide enough quality care? BMJ Support Palliat Care 2011; 1: Grant L, Downing J, Namukwaya E, Leng M, Murray SA. Palliative care in Africa since 2005: good progress, but much further to go. BMJ Support Palliat Care 2011; 1: Hartwig KN, Hartwig KA, DiSorbo P et al. Scaling up a community-based palliative care program among faith-based hospitals in Tanzania. J Palliat Care 2010; 26: Nanney E, Smith S, Hartwig K, Mmbando P. Scaling up palliative care services in rural Tanzania. J Pain Symptom Manage 2010; 40: Mwangi-Powell FN, Ddungu H, Downing J et al. Palliative care in Africa. In: Ferrell BR, Coyle N (eds). Oxford Textbook of Palliative Nursing, 3rd edn. New York: Oxford University Press, 2010: Knapp C, Woodworth L, Wright M et al. Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 2011; 57: Merriman A. Emerging breast cancer epidemic: impact on palliative care. Breast Cancer Res 2010; 12(Suppl 4): S Logie DE. An evaluation of a public health advocacy strategy to enhance palliative care provision in Zambia. BMJ Palliat Support Care 2012; 2: Namisango E, Harding R, Atuhaire L et al. Pain among ambulatory HIV/AIDS patients: multicenter study of prevalence, intensity, associated factors, and effect. J Pain 2012; 13: Malloy P, Paice JA, Ferrell BR et al. Advancing palliative care in Kenya. Cancer Nurs 2011; 34: E10 E Taylor TN. Because I was in pain, I just wanted to be treated : competing therapeutic goals in the performance of healing HIV/AIDS in rural Zimbabwe. JAm Folk 2010; 123: 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: Powell RA, Kaye RM, Ddungu H, Mwangi-Powell F. Advancing drug availability experiences from Africa. J Pain Symptom Manage 2010; 40: Ddungu H. Palliative care: what approaches are suitable in developing countries? Br J Haematol 2011; 154: 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: b Harding R, Albertyn R, Sherr L, Gwyther L. Pediatric palliative care in sub- Saharan Africa: a systematic review of the evidence for care models, interventions, and outcomes. J Pain Symptom Manage 2013 [Epub ahead of print]. 39. Amery JM, Rose CJ, Byarugaba C, Agupio G. A study into the children s palliative care educational needs of health professionals in Uganda. J Palliat Med 2010; 13: Amery JM, Rose CJ, Holmes J, Nguyen J, Byarugaba C. The beginnings of children s palliative care in Africa: evaluation of a children s palliative care service in Africa. J Palliat Med 2009; 12: Downing J, Ojing M, Powell RA et al. A palliative care outcome measure for children in sub-saharan Africa: early development findings. European Journal of Palliative Care 2012; 19: Logie DE, Harding R. An evaluation of a morphine public health programme for cancer and AIDS pain relief in Sub-Saharan Africa. BMC Public Health 2005; 5: Merriman A, Harding R. Pain control in the African context: the Ugandan introduction of affordable morphine to relieve suffering at the end of life. Philos Ethics Humanit Med 2010; 5: 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: Harding R, Simms V, Penfold S et al. Availability of essential drugs for managing HIV-related pain and symptoms within 120 PEPFAR-funded health facilities in East Africa: a cross-sectional survey with onsite verification. Palliat Med 2013 [Epub ahead of print]. 46. Lowther K, Simms V, Selman L et al. Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy. BMC Infect Dis 2012; 12: Lewington J, Namukwaya E, Limoges J, Leng M, Harding R. Provision of palliative care for life-limiting disease in a low income country national hospital setting: how much is needed? BMJ Support Palliat Care 2012; 2: Simms V, Gikaara N, Munene G et al. Multidimensional patient-reported problems within two weeks of HIV diagnosis in East Africa: a multicentre observational study. PLoS One 2013; 8: e Harding R, Simms V, Alexander C et al. Can palliative care integrated within HIV outpatient settings improve pain and symptom control in a low-income country? A prospective, longitudinal, controlled intervention evaluation. AIDS Care 2013; 25: 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: Harding R, Selman S, Powell RA et al. Research into palliative care in sub- Saharan Africa. Lancet Oncol 2013; 14: e183 e Moreland S, Namisango E, Paxton A, Powell RA. The Costs of HIV Treatment, Care and Support Services in Uganda. Chapel Hill, NC: MEASURE Evaluation, at_download/document (last accessed 22/08/2013) 53. Menzies NA, Berruti AA, Berzon R et al. The cost of providing comprehensive HIV treatment in PEPFAR-supported programs. AIDS 2011; 25: Harding R, Selman S, 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 2011; 47: Selman L, Harding R. How can we improve outcomes for patients and families under palliative care? Implementing clinical audit for quality improvement in resource limited settings. Indian J Palliat Care 2010; 16: Harding R, Higginson IJ. PRISMA: a pan-european co-ordinating action to advance the science in end-of-life cancer care. Eur J Cancer 2010; 46: Eve Namisango, Research Manager, African Palliative Care Association, Kampala, Uganda; Richard A Powell, Palliative Care Research Consultant, Nairobi, Kenya and former Deputy Director of Research, HealthCare Chaplaincy, New York, USA; Helen Kariuki, Lecturer in Medical Physiology, Department of Medical Physiology, University of Nairobi, Kenya; Richard Harding, Reader in Palliative Care, King s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK and Visiting Professor, Palliative Medicine Programme, Department of Public Health and Family Medicine, University of Cape Town, South Africa; Emmanuel Luyirika, Executive Director, African Palliative Care Association, Kampala, Uganda; Faith Mwangi- Powell, Chief of Party, University Research Company, Nairobi, Kenya 304 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(6)