Calling for advocacy, education and public policy actions on pain control for patients with cancer in Africa

It is of serious concern that there is a lack of focus on pain management in patients with cancer in Africa. Most patients with cancer present with advanced disease on diagnosis, experiencing moderate to severe pain and in need of palliative care. Integration of palli-ative and oncology care is recommended by European Society of Medical Oncology (ESMO) and by the World Health Assembly resolution WHA67.19.At the recent ESMO Summit Africa 2020, a Pain Workshop was attended by representatives from across Africa. A consensus was reached to escalate concerns about lack of pain management in patients with cancer in Africa and to call on ESMO to make universal cancer pain control, and integrated oncology and palliative care as an immediate priority area

A home-based approach to managing multi-drug resistant tuberculosis in Uganda: a case report

This case report describes an HIV-positive patient with recurrent tuberculosis in Uganda. After several failed courses of treatment, the patient was diagnosed with multi-drug resistant tuberculosis (MDR-TB). As adequate in-patient facilities were unavailable, we advised the patient to remain at home, and he received treatment at home via his family and a community nurse. The patient had a successful clearance of tuberculosis. This strategy of home-based care represents an important opportunity for treatment of patients in East Africa, where human resource constraints and inadequate hospital facilities exist for complex patients at high risk of infection to others

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

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

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

Cytomegalovirus Retinitis: The Neglected Disease of the AIDS Pandemic

The authors describe CMV retinitis in resource-poor settings and suggest possibilities for management

Documento de posición oficial sobre la promoción global de Cuidados Paliativos: recomendaciones del Grupo Internacional Asesor PAL-LIFE de la Academia Pontificia de la Vida, Ciudad del Vaticano

Contexto: La Academia Pontificia de la Vida (PAV) es una institución académica de la Santa Sede (Vaticano) cuyo objetivo es promover una visión católica de la ética biomédica. La PAV invitó a una serie de expertos en Cuidados Paliativos (CP) de todo el mundo, de todas las creencias, a desarrollar recomendaciones estratégicas para el desarrollo global de CP (“Grupo PAL-LIFE”). Diseño: Trece expertos internacionales reconocidos por su actividad promotora global de CP participaron en un estudio Delphi on-line. En un proceso de cuatro rondas, se pidió a los participantes que identificasen los grupos de interés o instituciones claves para la promoción de CP y que propusieran, para cada uno de ellos, recomendaciones estratégicas para el desarrollo de CP. Cada ronda incorporaba los comentarios de las rondas previas hasta lograr el consenso en las recomendaciones más importantes. En una última fase, al grupo de expertos se le solicitó la jerarquización por importancia de los grupos clave en una escala de 1 a 13. También se solicitaron sugerencias concretas para la implementación de las recomendaciones. Mediante análisis clúster se ordenaron los grupos de interés en dos niveles de importancia para el desarrollo de CP. Resultados: Trece recomendaciones fueron seleccionadas como las más importantes (una por cada grupo clave). Las recomendaciones para los grupos mejor puntuados fueron: (1) Responsables Políticos: garantizar el acceso universal a los CP; (2) Academia: ofrecer cursos obligatorios de CP en el pregrado; (3) Profesionales sanitarios: promover una certificación adecuada; (4) Hospitales e Instituciones sanitarias: asegurar el acceso a medicamentos de CP; y (5) Asociaciones de CP: ser promotoras eficaces y trabajar con los gobiernos en la implementación de las recomendaciones internacionales sobre CP. También se presentan recomendaciones para los ocho grupos clave restantes. Discusión: Este documento representa la posición oficial de la PAV en lo que respecta a estrategias de promoción para el desarrollo de los CP en el mundo

White paper for global Palliative Care advocacy: recommendations from a PAL-LIFE expert advisory Group of the Pontifical Academy for Life, Vatican City

Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC (“PAL-LIFE group”). Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. Discussion: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world

Redefining palliative care-a new consensus-based definition

Context: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective: The main objective of this article is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span