African Palliative Care Association Research Articles

Position Statement on Cancer Nursing Leadership.

Position Statement on Cancer Nursing Leadership.

The Declaration on Palliative Care in a Pandemic: report of the African Ministers of Health Meeting and the 7th International African Palliative Care Conference, held from the 24th to 26th August 2022 in Kampala, Uganda and virtually.

The 7th International African Palliative Care Conference and the 4th African Ministers of Health Meeting were held in Kampala from the 24th to 26th August 2022. The theme of the conference - Palliative Care in a Pandemic - reflected the reality of palliative care provision on the continent, and the experience of patients and providers over the past 2 years. It was hosted by the African Palliative Care Association and the Worldwide Hospice Palliative Care Alliance with co-sponsors being the International Children's Palliative Care Network, the International Association of Hospice and Palliative Care, Global Partners in Care and Palliative care in Humanitarian Aid Situations and Emergencies. The conference was held in Kampala as a hybrid event, with a mix of in-person, pre-recorded and virtual presentations. The African Ministers of Health Meeting held on the 24th August was attended by delegates from 25 Ministries of Health, with 92 participants in-person and 122 attending virtually. Hosted by the Minister of State for Primary Health Care in Uganda, the participants at the meeting endorsed a Declaration on Palliative Care in a Pandemic. The main conference, held on the 25th and 26th August, was attended by 334 delegates from 40 countries, 199 (60%) of whom attended in-person. Key themes discussed throughout the conference included: contagious compassion; building a business case and evidence for palliative care in Africa; palliative care policy, funding and sustainability; the importance of collaboration and global partnerships; palliative care for all ages, children through to the elderly, and all conditions; the need to be innovative and creative, embracing technology; and a feeling of hopefulness in the future of palliative care in the region as we go forward together. The impact of the pandemic has been significant on everyone. Despite this, and the limitations imposed by the pandemic, the African palliative care community has come through it stronger, is committed to continuing the development of palliative care across the region, working together and is hopeful for the future.

Early integrated palliative care in patients newly diagnosed with cancer in Ethiopia: a randomised controlled trial and cost–consequence analysis

BackgroundDeaths due to non-communicable diseases are rising worldwide, with low-income and middle- income countries (LMICs) particularly affected. Palliative care can reduce pain and suffering for patients with incurable disease. A gap in access to palliative care and research to support its implementation exists in LMICs, and cancer care is a particularly problematic area. We designed a pragmatic study to better understand the implementation of home-based palliative care, patient-reported outcomes, costs, and consequences in Addis Ababa, Ethiopia. MethodsA single-blind, single-site, randomised, controlled trial of standard cancer care versus standard cancer care plus early integrated palliative care in patients newly diagnosed with cancer was performed at the Black Lion Outpatient Oncology Clinic (Addis Ababa, Ethiopia). The palliative care intervention was home-based and delivered by Hospice Ethiopia nurses. Follow-up was done at 4–12 weeks and at 8–16 weeks at the discretion of the oncologist. Sample size was determined by ability to detect a change in mean African Palliative Care Association Palliative Outcome Score. A cost–consequence analysis was done for patients who completed all three study visits. Ethical approval was granted by Addis Ababa University and Yale University. All participants signed or thumb-printed written informed consent. The study is registered at ClinicalTrials.gov, NCT03712436. Findings98 adults were enrolled. The mean age was 49·5 years and 66% of participants were women. 27 participants completed all three study visits. Significant improvements in patient-reported outcomes were seen (p=0·0025). Mean total health-care costs to the patient were Ethiopian birr (ETD) 40 430 (US$979); mean palliative care costs to Hospice Ethiopia were ETD 765 ($19) per patient. Those receiving standard cancer care reported higher out-of-pocket payments for medical care and increased lost wages of an informal caregiver. Out-of-pocket payments for medical care and lost wages were multiple times higher than an average yearly salary (ETD 5810 [$141] and ETD 74900 birr [$1814·9] respectively). By the end of study, health-care costs, health-use, and mortality had all increased. InterpretationDelivery and integration of early, home-based, and low-cost palliative care into cancer care is possible in a LMIC setting. Widespread implementation of palliative care is likely to be a resource-sparing and poverty-reducing strategy in LMICs. FundingDepartment of Emergency Medicine, Yale University.

Training on adequate use of opioid analgesics in West and Central Africa: a neglected step on the way to access to essential medicines?

Alleviating acute and chronic pain is a moral imperative for health professionals and health systems, and it requires adequate access to and use of essential opioid analgesics. However, this is still a neglected issue in global health, with striking inequalities in opioids availability between high and low- and middle-income countries. Countries most affected by lack of access are those with a fragile political situation and weak regulatory and healthcare systems. The main threats to accessibility, availability and affordability are situated at different levels: legislation and policy, financing, knowledge and cultural behavior, erroneous beliefs, and training and education. Among these threats, the lack of (adequate) training and education seems to be a cross-cutting issue. Exploring the current body of knowledge about training and educational activities related to use of opioid analgesics and palliative care, is helpful to understand gaps and to delineate priorities for setting up adequate interventions. When applied to West and Central Africa, this exercise reveals that there is little information (easily) available in the public domain. The African Palliative Care Association (APCA) appears to be the leading provider of capacity building activities in this region for key stakeholders, including national authorities, healthcare professionals and the general population; it is also very active in publishing and communicating about these issues. However, apart from APCA, there is little information on training programs’ contents and long-term outcomes. Furthermore, trainings rarely target important stakeholders such as lawmakers, regulators, supply officers and the lay public (i.e., patients, caregivers, community leaders and members of the society as a whole). Hence, it is urgent to fill the existing gaps in training and educational activities to improve access to essential opioid analgesics in West and Central Africa, involving different stakeholders at the national and regional level. Furthermore, such experiences should be published and made publicly available to allow for mutual learning and further upscale.

Do the Clinical Management Guidelines for Covid-19 in African Countries Reflect the African Quality Palliative Care Standards? A Review of Current Guidelines

ContextPalliative care should be a component of COVID-19 management to relieve suffering, improve patient outcomes and save cost. ObjectivesWe aimed to identify and critically appraise the palliative care recommendations within COVID-19 case management guidelines in African countries. MethodsThe study employed systematic guideline review design. All guidelines from any country in Africa, of any language, published between December 2019 and June 2020 were retrieved through online search and email to in-country key contacts. We conducted a content analysis of the palliative care recommendations within the guidelines and appraised the recommendations using African Palliative Care Association standards for providing quality palliative care. ResultsWe retrieved documents from 29 of 54 African countries. Fifteen documents from 15 countries were included in the final analysis, of which eight countries have identifiable PC recommendations in their COVID-19 management guidelines. Of these eight, only one country (South Sudan) provided comprehensive palliative care recommendations covering the domains of physical, psychological, social and spiritual wellbeing, two (Namibia and Uganda) addressed only physical and psychological wellbeing while the remaining five countries addressed only physical symptom management. ConclusionsComprehensive palliative care which addresses physical, psychological, social and spiritual concerns must be prioritized within case management guidelines in African countries.

Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study

BackgroundThe prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its “silent” nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival.MethodsA mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients’ lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients’ experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months.DiscussionTo the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients’ need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings.

Preparedness of African Palliative Care Services to Respond to the COVID-19 Pandemic: A Rapid Assessment

ContextPalliative care is an essential component of the coronavirus disease 2019 (COVID-19) pandemic response but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown. ObjectivesTo evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic. MethodsWe developed, piloted, and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was electronically mailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted. ResultsAbout 83 participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap, and disinfectant products (43%, 42%, and 59%, respectively) and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional personal protective equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff in other health care settings. ConclusionOur survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety.

COVID-19: time to rethink palliative care strategy in resource-poor settings.

COVID-19: time to rethink palliative care strategy in resource-poor settings.

Rationale and study design: A randomized controlled trial of early palliative care in newly diagnosed cancer patients in Addis Ababa, Ethiopia

Patient-reported outcomes and economic aspects of Palliative Care (PC) provision in low-income countries (LIC) are under-studied. Demonstrating the economic value of PC is key to sustainability and guiding health care policy. Our preliminary data in Ethiopia demonstrated a widespread need for PC, poor access to it, and high out of pocket payments (OOP). We suspect that in this and other LIC, PC may function not only to reduce suffering but also as a poverty reduction strategy.We are conducting a randomized controlled trial of standard Oncology care versus standard Oncology care plus PC in newly diagnosed cancer patients in Addis Ababa. Ninety-seven adults presenting to Oncology Clinic will be randomized in a 1:1 ratio. Subjects receiving PC will meet with a PC provider at time of enrollment and at follow up visits in their homes. All subjects will be assessed via questionnaire at enrollment and follow-up Oncology visits at 8 ± 4 and 12 ± 4 weeks. A cost-consequence analysis will be performed, to include: patient-reported OOP and healthcare utilization, the latter to be assessed through chart adjudication. Outcomes will include change in African Palliative Care Association Palliative Outcome Score, changes in OOP and healthcare utilization.We hypothesize that the cost of home-based PC will be offset by improvements in patient-reported outcomes, decreased OOP and healthcare utilization, rendering PC cost-effective in this LIC. These findings may lead to widespread dissemination of an effective, sustainable and cost-saving public PC delivery strategy that would improve the quality of life and death for millions of people. Trial registrationClinicaltrials.gov NCT03712436.

Spiritual Care, Pain Reduction, and Preferred Place of Death Among Advanced Cancer Patients in Soweto, South Africa

ContextWhen religious and spiritual (R/S) care needs of patients with advanced disease are met, their quality of life (QoL) improves. We studied the association between R/S support and QoL of patients with cancer at the end of life in Soweto, South Africa. ObjectivesTo identify R/S needs among patients with advanced cancer receiving palliative care services and to assess associations of receipt of R/S care with patient QoL and place of death. MethodsA prospective cohort study conducted from May 1, 2016 to April 30, 2018 at a tertiary hospital in Soweto, South Africa. Nurses enrolled patients with advanced cancer and referred them to the palliative care multidisciplinary team. Spiritual counselors assessed and provided spiritual care to patients. We compared sociodemographic, clinical, and R/S factors and QoL of R/S care recipients and others. ResultsOf 233 deceased participants, 92 (39.5%) had received R/S care. Patients who received R/S care reported less pain (2.82 ± 1.23 vs. 1.93 ± 1.69), used less morphine, and were more likely to die at home than patients who did not (57.5% compared with 33.7%). On multivariate logistic regression analysis, adjusting for significant confounding influences and baseline African Palliative Care Association Palliative care Outcome Scale scores, receipt of spiritual care was associated with reduced pain and family worry (odds ratio 0.33; 95% CI 0.11–0.95 and odds ratio 3.43; 95% CI 1.10–10.70, respectively). ConclusionPatients with cancer have R/S needs. R/S care among our patients appeared to improve their end-of-life experience. More research is needed to determine the mechanisms by which R/S care may have improved the observed patient outcomes.

Engaging Health Ministers to Integrate Palliative Care Into National Health Systems in Africa

Background and context: The African Palliative Care Association (APCA) is a pan-African entity aiming to strengthen health systems in Africa by integrating palliative care for life threatening illnesses. Africa has 54 states and 1.2 billion people with high burdens of cancer, HIV and other infectious and NDCs for which palliative care is needed. Most of them lack national palliative care policies, palliative care delivery system, access to controlled medicines and radiotherapy for treatment or palliation of cancer. Aim: The aim was for APCA to gather ministers of health from Africa to be informed about palliative care and have them support the setting up of sustainable palliative care models in their countries. Strategy/Tactics: The strategies involved contacting individual ministers by country and specifically sharing with them the evidence in terms of palliative care need, making them aware of national, regional and international frameworks that commit them to support palliative care integration into health systems, improving access to controlled medicines, radiotherapy and other palliative care interventions. These frameworks include their own national laws and policies, the 2012 African Common Position on access to controlled substances for pain control, the WHA resolutions related to palliative care and cancer and the international frameworks calling for balancing control and access to controlled medicines for medical and scientific use. APCA working with host ministers of health at the international triennial palliative care conference, organizes a preconference African ministers of health session on palliative care. Program/Policy process: The process involves engaging APCA partners to fund the ministers´ palliative care session. APCA then works with the minister of the host country to invite African ministers to a one-day session where selected ministers share their best practices and challenges. International agencies such as WHO, IAEA, INCB and UICC have a chance to update the ministers too. The host country provides security and protocol requirements while APCA and partners work on the technical input into the day´s program and the preparation of the declaration which is passed at the end of the session. Outcomes: Two ministers of health sessions on palliative care have been held. The first was cohosted with the Minister of Health of South Africa in 2013, attracted 92 delegates from 23 countries. It resulted into the Johannesburg Declaration with ministers committed to supporting palliative care and working together on a consensus before the 2014 WHA Palliative Care Resolution. The 2016 meeting was held in Kampala attracted 163 delegates from 48 countries who signed on the Kampala Declaration committing to implementing the WHA PC Resolution and availing essential technologies. What was learned: Ministers in Africa are open to engaging with civil society to improve the health system and access to cancer and palliative care.

A Regional Palliative Care Entity Working With a Host Government to Facilitate Exchange Visits From Across Africa to Improve Access to Controlled Medicines for Cancer Patients

Background and context: The African Palliative Care Association (APCA) is a pan-African palliative care organization hosted in Uganda but supporting initiatives to integrate palliative care into national health systems across Africa. Uganda hosts one of the oldest cancer units in Africa and also reconstitutes its own oral liquid morphine to reduce barriers and cost of access to pain control for patients. Aim: The aim of this effort is to expose government officials and other NGOs from other African countries to best practices in oral morphine manufacture, distribution and access to controlled medicines for pain control in cancer and other conditions with a view to benchmark and establish similar or better systems. Strategy/Tactics: APCA working with its funders in consultation with the Ugandan Ministry of Health and Hospice Africa Uganda, facilitates other African ministries of health delegations to conduct study visits in Uganda to benchmark the oral morphine reconstitution, the supply chain mechanisms for its distribution to patients in both public and private hospitals and at home. Program/Policy process: APCA identifies countries with morphine access challenges and makes arrangements for key personnel in those countries in ministries of health, medicines control authority, central medicines stores and national palliative care associations where they exist to spend a study period in Uganda. While in Uganda, the delegations visit the oral morphine manufacturing facility, Hospice Africa Uganda, the Ministry of Health, national medical stores, National Drug Authority, joint medical stores and some of the palliative care providers and training facilities. Once the period with the various stakeholders in the country is completed, the visiting teams draw up plans for implementation and identify required technical assistance from APCA. The costing and sources of funding are identified including contribution from the government in need and then activities are implemented. Outcomes: As a result of this South-to-South approach, Uganda has hosted delegations from 14 African countries. At one instance, it involved the Minister Of Health from Swaziland heading a delegation to Uganda while others sent other high level delegates to the peer learning and bench marking. All these countries have taken steps to establish access to oral liquid morphine as well as policy and capacity building activities for their staff. Some of the countries like Malawi and Swaziland are already having morphine reconstitution and national palliative care policies while others such as Rwanda and Botswana are in the process of changing to the same system. Cancer and palliative care related activities are also being implemented in some of countries. Some countries have graduated to host others like Uganda does. What was learned: The South-to-South learning and bench marking visits are very practical in Africa and have triggered palliative care initiatives at national level.

The Role of South-to-South Partnerships in Developing Cancer Services in Africa

Background and context: Despite being a growing public health concern in Africa, access to effective cancer treatment and pain relief is still limited in sub-Saharan Africa. The African Palliative Care Association (APCA) in collaboration with the American Cancer Society and the Ministry of Health of Swaziland have successfully implemented a South-to-South partnership which has facilitated the development and operation of a cancer unit in Mbabane National Hospital. Although the cancer burden continues to rise in Africa, many countries do not have established oncology services. They rely on cancer treatment, care and support through referral to neighboring countries or overseas, which is costly for governments and poses multiple challenges for patients and their families. Until recently, Swaziland has relied on cancer treatment and care in South Africa. This paper presents a model where the Uganda Cancer Institute (UCI) in Uganda has been facilitated to support the establishment of a cancer unit in Swaziland. Aim: The intervention aimed at providing technical assistance to the Ministry of Health of Swaziland to initiate and operate a cancer unit in Mbabane Government Hospital through a formal arrangement with the UCI. Strategy/Tactics: The planning and execution of activities was done by a tripartite of APCA, Uganda Cancer Institute a government entity and the Swazi Ministry of Health. Program/Policy process: Over a period of one year (Decemeber 2016 to December 2017) APCA, through a grant from the ACS formerly engaged the UCI to support the initiation and operation of a cancer unit in Swaziland. This was through expert exchange visits through which on-job training and mentorship was provided to a team of staff at Mbabane Government Hospital, with coordination by the Swaziland Ministry of Health. Experiential visits to Uganda were also organized for the lead pharmacist in Swaziland and a doctor to enable them set up and run a cancer unit in their country. The exchange visits provided a forum for both observation and application of knowledge and skills. Outcomes: A cancer unit was successfully established at Mbabane Government Hospital in Swaziland, which now provides services for patients, with breast cancer and expanding to include other cancers. The Swaziland Ministry of Health has been key to the success of this development and continues to identify human, financial and other resources to sustain the cancer unit. To date 69 patients have successfully undergone chemotherapy: 43 breast cancer, 22 Kaposi sarcoma, 2 colorectal cancer, 1 bladder cancer, 1 multiple myeloma. 21 health care workers were trained on cancer management; 9 doctors, 7 nurses and 5 pharmacists. What was learned: There are many opportunities for South-to-South partnership to support the establishment or improvement of cancer care. This model implemented in Swaziland can be replicated in other African countries. Documenting the model for replication in other countries is recommended.

Outcome measurement in paediatric palliative care: lessons from the past and future developments.

The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children. This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children's Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences. Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC-the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won't be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings. The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.

Palliative care in northern Tanzania: doing a lot with a little.

The number of people in need of palliative care is growing worldwide, particularly in the developing world. The World Health Organization recognises palliative care as a basic human right, but there are many challenges for delivering palliative care in low- and middle-income countries. In the African continent, the African Palliative Care Association (APCA) provides guidance for political advocacy for developing palliative care programmes and has developed the APCA Palliative Outcome Score (POS), an evidence-based tool for measuring outcomes of palliative care. This article focuses on palliative care delivery in Shirati, Tanzania, located in the Rorya District in the Mara Region in northern Tanzania, highlighting the impressive work done with limited resources and despite many challenges. Recommendations for future research include evaluation of outcomes using the APCA POS, the application of mobile technology, and governmental advocacy for increased access to opioid medications, which have shown promise in broadening the reach of palliative care in the East African Community.

The African Palliative Care Association (APCA) Atlas of Palliative Care Development in Africa: a comparative analysis

Abstract Background Although there are global studies on palliative care development, none report region-specific indicators of development for each country in Africa. We aimed to develop and deploy a set of indicators to measure the current state of palliative care development in Africa according to WHO's Public Health Strategy for integrating palliative care, including policies, availability and access to medicines, education, and service provision. Methods Qualitative interviews were conducted with 16 country experts between March and 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 and feasibility, a 14-member international committee of experts participated in a two-round modified UCLA-RAND Delphi consensus, and the coauthors ranked the indicators during November–December 2016. The final 19 indicators were further defined and sent to 66 key country informants from 51 African countries during January–March 2017. Findings Surveys were received from 48 countries. Uganda, South Africa, and Kenya have the highest number of specialised hospice and palliative care services (71% of identified palliative care services); 19% (9/48) have no identified hospice and palliative care services. 22% (12/48) indicated having stand-alone palliative care policies, and 42% (20/48) reported having a dedicated person for palliative care 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% of countries had Interpretation There is limited palliative care development in Africa, but there is also a significant improvement in the number of countries with hospice and palliative care services, compared to previous reports. Improvements in advocacy were identified, with more than half of countries reporting a national palliative care association. Governments need to take the steps to improve education, increase the number of services, and ensure safe access to opioids. Funding Arnhold Institute of Global Health at the Icahn School of Medicine at Mount Sinai, the African Palliative Care Association, the International Association for Hospice and Palliative Care, and the Institute for Culture and Society at the University of Navarra.

Cancer and palliative care in Africa.

Cancer and palliative care in Africa.

Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial

People with HIV accessing antiretroviral therapy (ART) have persistent physical, psychological, social, and spiritual problems, which are associated with poor quality of life and treatment outcomes. We assessed the effectiveness of a nurse-led palliative care intervention on patient-reported outcomes. We did this randomised controlled trial at a clinic in Kenya for adults with HIV, established on ART, and reporting moderate-to-severe pain or symptoms. We randomly assigned participants (1:1) either to a palliative care intervention (including assessments of physical, emotional, and spiritual wellbeing and quality of life) given six times over 4 months, or to usual care. Participants and investigators were not masked to allocation. The primary outcome was pain (scored on the African Palliative Care Association's African Palliative Outcome Scale). This trial is registered with ClinicalTrials.gov, number NCT01608802. We screened 2070 patients, of whom we enrolled 120: 60 allocated to each group. In the control group, median pain score improved from 1·0 (IQR 0·0-2·0) at baseline to 5·0 (3·0-5·0) at 4 months; in the intervention group, it improved from 1·0 (0·0-2·0) at baseline to 4·5 (3·0-5·0) at 4 months. Compared with standard care, the intervention had no significant effect on pain (coefficient -0·01, 95% CI -0·36 to 0·34, p=0·95). A nurse-led palliative care intervention was not effective in reducing pain. However, person-centred assessment and care delivered by staff who have received additional training had positive effects on self-reported mental health related quality of life and psychosocial wellbeing. Diana Princess of Wales Memorial Fund.

Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa

BackgroundDespite a high incidence of life-limiting disease, there is a deficit of palliative care outcome evidence in sub-Saharan Africa. Providers of end of life care call for appropriate measurement tools. The objective is to compare four approaches to self-report pain and symptom measurement among African palliative care patients completing the African Palliative Care Association African Palliative Outcome Scale (APCA African POS).MethodsPatients were recruited from five services (4 in South Africa and 1 in Uganda). Research nurses cross-sectionally administered POS pain and symptom items in local languages. Both questions were scored from 0 to 5 using 4 methods: verbal rating, demonstrating the score using the hand (H), selecting a face on a visual scale (F), and indicating a point on the Jerrycan visual scale (J). H, F and J scores were correlated with verbal scores as reference using Spearman’s rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed.Results315 patients participated (mean age 43.5 years, 69.8% female), 71.1% were HIV positive and 35.6% had cancer, 49.2% lived in rural areas. Spearman’s rank correlations for pain scores were: H: 0.879, F: 0.823, J: 0.728 (all p < 0.001); for symptoms H: 0.876, F: 0.808, J: 0.721 (all p < 0.001). Weighted Kappa for pain was H: 0.798, F: 0.719 J: 0.548 and for symptoms: H: 0.818, F: 0.718, J: 0.571. There was lower agreement between verbal and both hand and face scoring methods in the Ugandan sample. Compared to the verbal scale the accuracy of predicting high pain/symptoms was H > F > J (0.96–0.89) in ROC analysis.ConclusionsHands and faces scoring methods correlate highly with verbal scoring. The Jerrycan method had only moderate weighted Kappa. POS scores can be reliably measured using hand or face score.

The net effect: spanning diseases, crossing borders-highlights from the fourth triennial APCA conference and annual HPCA conference for palliative care.

The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17–20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, ‘The Net Effect: Spanning Diseases, Crossing Borders’, reflected this joint vision and the drive to remember the ‘net effect’ of our work in palliative care—that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten ‘C’s of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can ‘span diseases,’ ‘cross borders,’ and realise the ‘African Dream’ for palliative care.