APCA Atlas of Palliative Care in Africa

BACKGROUND Since Wright & Clark’s book on palliative care in Africa in 2006, there has not been a comprehensive overview describing the state of palliative care development in African countries. AIMS To describe the current state of palliative care (PC) development in Africa according to the WHO’s Public Health Strategy for integrating PC: policies, availability and access to medicines, education, and service provision. METHODS Qualitative interviews were conducted with 16 Country Experts (March-August 2016). From those interviews, 367 indicators were derived, 130 after exclusion criteria and content analysis were performed. The Country Experts rated the indicators for validity & feasibility, a 14-member international committee of experts participated in a two-round modified UCLA-RAND Delphi consensus, and the co-authors (November-December 2016) ranked the indicators. The final 19 indicators were further defined and sent to 66 Key Country Informants from 51 African countries (January-March 2017). RESULTS Surveys were received from 89% (48/54) of African countries. Uganda, South Africa, and Kenya have the highest number of specialised hospice and PC services (71% of identified PC services); 19% (9/48) have no identified hospice and PC services. 22% (12/48) indicated having stand-alone PC policies, and 42% (20/48) reported having a dedicated person for PC in the Ministry. Zambia, Uganda, South Africa, Kenya, Ghana, and Egypt reported some official form of physician accreditation. Opioid consumption per capita was low (75% countries had <1 mg consumption/capita/year) compared to the global average (43mg/capita/year), with highest consumption in Mauritius, South Africa, Namibia, and Morocco. 54% (26/48) reported having a national PC association. CONCLUSIONS This study shows that there is limited PC development in Africa, but there is also a significant improvement in the number of countries with hospice and PC services, compared to previous reports. Improvements in advocacy were identified, with more than half of countries reporting a national PC association. Governments need to take the steps to improve education, increase the number of services, and ensure safe access to opioids

An analysis of palliative care development in Africa: a ranking based on region-specific macro-indicators

CONTEXT: To date, there is no study comparing palliative care (PC) development among African countries. OBJECTIVE: To analyze comparatively PC development in African countries based on region-specific indicators. METHODS: Data were obtained from the APCA Atlas of PC in Africa and a comparative analysis conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the WHO public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52/54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. RESULTS: Surveys were received from 89% (48/54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia. CONCLUSION: Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development

Towards person-centered quality care for children with life-limiting and life-threatening illness: self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

Abstract Background: Paediatric life-limiting and life-threatening conditionslife-limiting conditions place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. Aim: This study aimed to identify the symptoms, concerns, and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years with life-limiting conditions were purposively sampled by age, sex, and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.Results: 120 interviews were conducted with children with life-limiting conditions (n=61 age range 7-17 years), and where self-report was not possible caregivers (n=59) of children (age range 0-17). Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included: physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g., play, school attendance); existential concerns – worry about death, and loss of ambitions,health care quality– child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation

A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3–5 chronic kidney diseases: study protocol

Background: The burden of symptoms and other concerns in chronic kidney disease (CKD) is known to be high, adversely affecting the quality of life of the growing number of those with this condition in developing countries. In this paper, we describe the protocol of a longitudinal observational study among people living with CKD. The study is developed to assess the bio-psychosocial factors associated with palliative care symptoms and concerns, and pattern of health services usage among Nigerians with stages 3–5 CKD. The overall objective is to establish the evidence-base for advocacy and policy formulation, treatment guidelines, care and services, and future clinical trial studies.Methods: This is a multi-center study to investigate the longitudinal course of symptoms and other concerns among patients with stages 3–5 CKD in Nigeria. Interviewer administered and self-report measures at baseline (T0) and 3-month (T1) address socio-demographic characteristics, clinical-illness related information, palliative care-related symptoms and other concerns, pattern of formal or informal service usage, and bio psychosocial measures including estimated glomerular filtration rate (eGFR), anxiety, depression, quality of life, functioning, social support and spiritual wellbeing.Discussion: This study represents the first longitudinal investigation of palliative care symptoms and concerns among people with CKD in Nigeria. It includes early stages of CKD in compliance with best practices, and a comprehensive range of bio-psychosocial outcomes to understand how these factors are associated with symptoms. This study will provide evidence for how best to integrate palliative care into management of CKD to improve care and quality of life of people with CKD. The study team welcomes collaborations with both national and international researchers

Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: study protocol

BACKGROUND: A public health response is essential to meet the multidimensional needs of patients and families affected by HIV disease in sub-Saharan Africa. In order to appraise current provision of HIV care and support in East Africa, and to provide evidence-based direction to future care programming, and Public Health Evaluation was commissioned by the PEPFAR programme of the US Government. METHODS/DESIGN: This paper described the 2-Phase international mixed methods study protocol utilising longitudinal outcome measurement, surveys, patient and family qualitative interviews and focus groups, staff qualitative interviews, health economics and document analysis. Aim 1) To describe the nature and scope of HIV care and support in two African countries, including the types of facilities available, clients seen, and availability of specific components of care [Study Phase 1]. Aim 2) To determine patient health outcomes over time and principle cost drivers [Study Phase 2]. The study objectives are as follows. 1) To undertake a cross-sectional survey of service configuration and activity by sampling 10% of the facilities being funded by PEPFAR to provide HIV care and support in Kenya and Uganda (Phase 1) in order to describe care currently provided, including pharmacy drug reviews to determine availability and supply of essential drugs in HIV management. 2) To conduct patient focus group discussions at each of these (Phase 1) to determine care received. 3) To undertake a longitudinal prospective study of 1200 patients who are newly diagnosed with HIV or patients with HIV who present with a new problem attending PEPFAR care and support services. Data collection includes self-reported quality of life, core palliative outcomes and components of care received (Phase 2). 4) To conduct qualitative interviews with staff, patients and carers in order to explore and understand service issues and care provision in more depth (Phase 2). 5) To undertake document analysis to appraise the clinical care procedures at each facility (Phase 2). 6) To determine principle cost drivers including staff, overhead and laboratory costs (Phase 2). DISCUSSION: This novel mixed methods protocol will permit transparent presentation of subsequent dataset results publication, and offers a substantive model of protocol design to measure and integrate key activities and outcomes that underpin a public health approach to disease management in a low-income setting

APCA Atlas of Palliative Care in Africa

BACKGROUND Since Wright & Clark’s book on palliative care in Africa in 2006, there has not been a comprehensive overview describing the state of palliative care development in African countries. AIMS To describe the current state of palliative care (PC) development in Africa according to the WHO’s Public Health Strategy for integrating PC: policies, availability and access to medicines, education, and service provision. METHODS Qualitative interviews were conducted with 16 Country Experts (March-August 2016). From those interviews, 367 indicators were derived, 130 after exclusion criteria and content analysis were performed. The Country Experts rated the indicators for validity & feasibility, a 14-member international committee of experts participated in a two-round modified UCLA-RAND Delphi consensus, and the co-authors (November-December 2016) ranked the indicators. The final 19 indicators were further defined and sent to 66 Key Country Informants from 51 African countries (January-March 2017). RESULTS Surveys were received from 89% (48/54) of African countries. Uganda, South Africa, and Kenya have the highest number of specialised hospice and PC services (71% of identified PC services); 19% (9/48) have no identified hospice and PC services. 22% (12/48) indicated having stand-alone PC policies, and 42% (20/48) reported having a dedicated person for PC in the Ministry. Zambia, Uganda, South Africa, Kenya, Ghana, and Egypt reported some official form of physician accreditation. Opioid consumption per capita was low (75% countries had <1 mg consumption/capita/year) compared to the global average (43mg/capita/year), with highest consumption in Mauritius, South Africa, Namibia, and Morocco. 54% (26/48) reported having a national PC association. CONCLUSIONS This study shows that there is limited PC development in Africa, but there is also a significant improvement in the number of countries with hospice and PC services, compared to previous reports. Improvements in advocacy were identified, with more than half of countries reporting a national PC association. Governments need to take the steps to improve education, increase the number of services, and ensure safe access to opioids