From disease- to people-centred pandemic management: organized communities, community-oriented primary care and health information systems.

BACKGROUND: The COVID-19 pandemic exposed the health equity gap between and within countries. Western countries were the first to receive vaccines and mortality was higher among socially deprived, minority and indigenous populations. Surprisingly, many sub-Saharan countries reported low excess mortalities. These countries share experiences with community organization and participation in health. The aim of this article was to analyse if and how this central role of people can promote a successful pandemic response. METHODS: This analysis was partly based on local and national experiences shared during an international and Latin American conference on person-and people-centred care in 2021. Additionally, excess mortality data and pandemic control-relevant data, as well as literature on the pandemic response of countries with an unexpected low excess mortality were consulted. RESULTS: Togo, Mongolia, Thailand and Kenya had a seven times lower mean excess mortality for 2020 and 2021 than the United States of America. More successful pandemic responses were observed in settings with experience in managing epidemics like Ebola and HIV, well-established community networks, a national philosophy of mutual aid, financial government assistance, more human resources for primary care and paid community health workers. DISCUSSION: Since trust in authorities and health needs vary greatly, local strategies are needed to complement national and international pandemic responses. Three key levers were identified to promote locally-tailored pandemic management: well-organized communities, community-oriented primary care, and health information systems. An organized community structure stems from a shared ethical understanding of humanity as being interconnected with each other and the environment. This structure facilitates mutual aid and participation in decision making. Community-oriented primary care includes attention for collective community health and ways to improve health from its roots. A health information system supports collective health and health equity analysis by presenting health needs stratified for social deprivation, ethnicity, and community circumstances. CONCLUSIONS: The difference in excess mortality between countries during the COVID-19 pandemic and various country experiences demonstrate the potential of the levers in promoting a more just and effective health emergency response. These same levers and strategies can promote more inclusive and socially just health systems.

RESUMEN: ANTECEDENTES: La pandemia de COVID-19 expuso la brecha de equidad en salud dentro y entre países. Los países occidentales fueron los primeros en recibir vacunas y la mortalidad fue mayor entre las poblaciones indígenas, minoritarias y socialmente desfavorecidas dentro de los países. Sorprendentemente, muchos países subsaharianos reportaron un exceso de mortalidad bajo. Estos países comparten experiencias de organización y participación comunitaria en salud. El objetivo es analizar si y cómo este papel central de las personas puede promover una respuesta exitosa a la pandemia. MéTODOS: Este análisis se basa en parte en las experiencias locales y nacionales compartidas durante una conferencia internacional y latinoamericana sobre la atención centrada en las personas y comunidades en 2021. Además, se consultó los datos de exceso de mortalidad y los datos relevantes para el control de la pandemia, así como la literatura sobre la respuesta a la pandemia de países con un exceso de mortalidad inesperadamente bajo. RESULTADOS: Togo, Mongolia, Tailandia y Kenia tuvieron un exceso de mortalidad promedio por 2020 y 2021 siete veces menor que los Estados Unidos de América. Se observaron respuestas pandémicas más exitosas en entornos con experiencia en el manejo de epidemias como el ébola y el VIH, redes comunitarias bien establecidas, una filosofía nacional de ayuda mutua, asistencia financiera del gobierno, más recursos humanos para atención primaria y trabajadores de salud comunitarios remunerados. DISCUSIóN: Dado que la confianza en autoridades y las necesidades en salud varían mucho, se necesitan estrategias locales para complementar las respuestas nacionales e internacionales a la pandemia. Se identificaron tres palancas clave para promover la gestión de pandemias adaptada localmente: comunidades bien organizadas, atención primaria orientada a la comunidad y sistemas de información de salud. Una estructura comunitaria organizada surge de una comprensión ética compartida que concibe a la humanidad interconectada entre sí y con el medio ambiente. Esta estructura facilita la ayuda mutua y la participación en la toma de decisiones. La atención primaria orientada a la comunidad incluye la atención a la salud comunitaria colectiva y las formas de mejorar la salud desde sus raíces. Un sistema de información de salud puede apoyar el análisis de la salud colectiva y la equidad en salud al presentar las necesidades de salud estratificadas por privación social, etnicidad y circunstancias de la comunidad. CONCLUSIONES: La diferencia en el exceso de mortalidad entre países durante la pandemia de COVID-19 y las experiencias de varios países, demuestran el potencial de las palancas para promover una respuesta de emergencia sanitaria más justa y eficaz. Estas mismas palancas y estrategias pueden promover sistemas de salud más inclusivos y socialmente justos.

The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya.

OBJECTIVES: Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya. METHODS: Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE). RESULTS: Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004). SIGNIFICANCE OF RESULTS: Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.

Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries.

BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.

Untapped potential of nature-based activities for mental health: need for further research.

In April 2022, the Intergovernmental Panel on Climate Change stated clearly that without immediate and deep reductions in greenhouse gas emissions, it would be impossible to limit global temperature rise to 1.5 °C above pre-industrial levels. A growing body of research shows an increasing reaction to witnessing or experiencing current climate impacts and concern regarding apparent inaction in response, manifests as negative cognitive, emotional, and behavioural responses, including eco-anxiety. This commentary contends that nature-based activities (NBAs) have a potentially important, but currently neglected, role to play in supporting those experiencing eco-anxiety. However, existing research limitations hinder their adoption in the United Kingdom's social prescribing agenda and they remain a largely untapped therapeutic resource that need to be mainstreamed into clinical and social care provision. The paper calls for investment in research that advances our understanding of the individual and community benefits of NBAs, the longevity of their impact, and their associated, comparative and opportunity costs.

Valuing the Spiritual.

Identifying reforms that minimize US healthcare costs is imperative. This commentary explores one intervention with potential cost-saving implications that has received comparably minimal consideration: spiritual care provision. It highlights the staff and patient costing benefits of spiritual care in addressing spiritual distress and urges practical policy and research initiatives to maximize its impact.

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

BACKGROUND: Paediatric life-limiting and life-threatening conditions (life-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: A total of 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) were included. 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.

Exploring the capacity of the Somaliland healthcare system to manage female genital mutilation / cutting-related complications and prevent the medicalization of the practice: a cross-sectional study.

BACKGROUND: Female genital mutilation/cutting (FGM/C) negatively impacts the wellbeing of girls and women throughout their lifecycle. In Somalia, FGM/C prevalence is nearly universal (98%) among females aged 15-49 years, with infibulation prevalence at 77%. Whilst there is need to engage healthcare workers in the prevention and management of FGM/C, minimal information exists indicating healthcare systems' capacity to fulfil this role. This study explored factors impacting the capacity of the Somaliland healthcare system to prevent the medicalization, and manage the complications of, FGM/C. METHODS: A cross-sectional qualitative study using semi-structured key informant interviews, conducted in the Somali language, was undertaken in the Maroodi Jeex and Awdal regions of Somaliland, in rural and urban Borama and Hargeisa districts in December 2016. A total of 20 interviews were conducted with healthcare workers comprised of medical doctors, nurses, midwives and system administrators. Transcribed and translated interview data were analysed using the template analysis approach. RESULTS: Healthcare workers reported understanding the adverse impact of FGM/C on the health of girls and women. However, they faced multiple contextual challenges in their preventative and management roles at the individual level, e.g., they lacked specific formal training on the prevention and management of FGM/C complications and its medicalization; institutional level, e.g., many facilities lacked funding and equipment for effective FGM/C management; and policy level, e.g., no national policies exist on the management of FGM/C complications and against its medicalization. CONCLUSION: Healthcare systems in urban and rural Somaliland have limited capacity to prevent, diagnose and manage FGM/C. There is a need to strengthen healthcare workers' skill deficits through training and address gaps in the health system by incorporating the care of girls and women with FGM-related complications into primary healthcare services through multi-sectoral collaboration and coordination, establishing clinical guidelines for FGM/C management, providing related equipment, and enacting policies to prevent the medicalization of the practice.

Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.

BACKGROUND: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. AIM: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. DESIGN: Focus group study. SETTING/PARTICIPANTS: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. RESULTS: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs. CONCLUSION: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.

Palliative care in Africa: a scoping review from 2005-16.

Since the last comprehensive review on the development of national palliative care in Africa was undertaken 12 years ago, in 2005, we did a scoping review of peer-reviewed, published articles on palliative care development between 2005-16 for each African country. The scoping review was conducted by assessing the medical literature and including local expert recommendations of suggested articles. We did a basic quality assessment of the articles using the journals' impact factor, journal quartile, and the number of citations as suitable metrics for quality consideration. Articles published in English, Spanish, Portuguese, and French that mentioned at least one dimension of WHO's palliative care public health strategy (implementation of services, education, policies, or medicine availability) and vitality (activity by professionals or advocates) were included. Of the 518 articles found, 49 met the inclusion criteria. Information on 26 (48%) of 54 African countries was found. Most services were concentrated in Kenya, South Africa, and Uganda, and 14 (26%) countries showed an increase in services during this timeframe. Stand-alone palliative care policies exist in Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe. Postgraduate diplomas in palliative care are available in Kenya, South Africa, Uganda, and Tanzania. Restricted access to opioids, prescriber restriction laws, and a low prevalence of morphine use remain common barriers to adequate palliative care provision. Although information on palliative care is unevenly distributed, the available information showed an increased development of palliative care services in a subset of African countries. Despite this growth, however, there is still minimal to no identified palliative care development in most African countries.

A novel symptom cluster analysis among ambulatory HIV/AIDS patients in Uganda.

Symptom clusters are gaining importance given HIV/AIDS patients experience multiple, concurrent symptoms. This study aimed to: determine clusters of patients with similar symptom combinations; describe symptom combinations distinguishing the clusters; and evaluate the clusters regarding patient socio-demographic, disease and treatment characteristics, quality of life (QOL) and functional performance. This was a cross-sectional study of 302 adult HIV/AIDS outpatients consecutively recruited at two teaching and referral hospitals in Uganda. Socio-demographic and seven-day period symptom prevalence and distress data were self-reported using the Memorial Symptom Assessment Schedule. QOL was assessed using the Medical Outcome Scale and functional performance using the Karnofsky Performance Scale. Symptom clusters were established using hierarchical cluster analysis with squared Euclidean distances using Ward's clustering methods based on symptom occurrence. Analysis of variance compared clusters on mean QOL and functional performance scores. Patient subgroups were categorised based on symptom occurrence rates. Five symptom occurrence clusters were identified: Cluster 1 (n=107), high-low for sensory discomfort and eating difficulties symptoms; Cluster 2 (n=47), high-low for psycho-gastrointestinal symptoms; Cluster 3 (n=71), high for pain and sensory disturbance symptoms; Cluster 4 (n=35), all high for general HIV/AIDS symptoms; and Cluster 5 (n=48), all low for mood-cognitive symptoms. The all high occurrence cluster was associated with worst functional status, poorest QOL scores and highest symptom-associated distress. Use of antiretroviral therapy was associated with all high symptom occurrence rate (Fisher's exact=4, P<0.001). CD4 count group below 200 was associated with the all high occurrence rate symptom cluster (Fisher's exact=41, P<0.001). Symptom clusters have a differential, affect HIV/AIDS patients' self-reported outcomes, with the subgroup experiencing high-symptom occurrence rates having a higher risk of poorer outcomes. Identification of symptom clusters could provide insights into commonly co-occurring symptoms that should be jointly targeted for management in patients with multiple complaints.

Transcending differences to study the transcendent: an exploratory study of researchers' and chaplains' reflections on interdisciplinary spiritual care research collaboration.

BACKGROUND: Despite recognition of the centrality of professional board-certified chaplains (BCC) in palliative care, the discipline has little research to guide its practices. To help address this limitation, HealthCare Chaplaincy Network funded six proposals in which BCCs worked collaboratively with established researchers. Recognizing the importance of interdisciplinary collaboration in the development of a new field, this paper reports on an exploratory study of project members' reflections over time on the benefits and challenges of conducting inter-disciplinary spiritual care research. METHODS: Data collection occurred in two stages. Stage 1 entailed two independent, self-reflective focus groups, organized by professional discipline, mid-way through the site projects. Stage 2 entailed end-of-project site reports and a conference questionnaire. RESULTS: Eighteen professionals participated in the group discussions. Stage 1: researchers perceived chaplains as eager workers passionately committed to their patients and to research, and identified challenges faced by chaplains in learning to conduct research. Chaplains perceived researchers as passionate about their work, were concerned research might uncover negative findings for their profession, and sensed they used a dissimilar paradigm from their research colleagues regarding the 'ways of relating' to knowledge and understanding. Stage 2: researchers and chaplains noted important changes they ascribed to the interdisciplinary collaboration that were classified into six domains of cultural and philosophical understanding: respect; learning; discovery; creativity; fruitful partnerships; and learning needs. CONCLUSIONS: Chaplains and researchers initially expressed divergent perspectives on the research collaborations. During the projects' lifespans, these differences were acknowledged and addressed. Mutual appreciation for each discipline's strengths and contributions to inter-professional dialogue emerged.

The HIV basic care package: where is it available and who receives it? Findings from a mixed methods evaluation in Kenya and Uganda.

An evidence-based basic care package (BCP) of seven interventions (Family testing, Cotrimoxazole, Condoms, Multivitamins, Access to safe water treatment, Isoniazid preventive therapy (IPT), and Insecticide-treated bednet) has been advocated to prevent infections among people with HIV in low-income settings. We examined the availability and receipt of the BCP in HIV outpatient clinics in Kenya and Uganda. A survey of 120 PEPFAR-funded facilities determined the services offered. At each of the 12 largest facilities, a longitudinal cohort of 100 patients was recruited to examine care received and health status over three months. The full BCP was offered in 14% (n = 17/120) of facilities; interventions most commonly offered were Support for family testing (87%) and Condoms (87%), and least commonly IPT (38%). Patients (n = 1335) most commonly reported receiving Cotrimoxazole (57%) and Multivitamins (36%), and least commonly IPT (4%), directly from the facility attended. The BCP (excluding Isoniazid) was received by 3% of patients directly from the facility and 24% from any location. BCP receipt was associated with using antiretroviral therapy (ART; OR 1.1 (95% CI 1.0-1.1), receipt from any location) but not with patient gender, wealth, education level or health. The BCP should be offered at more HIV care facilities, especially Isoniazid, and to more people irrespective of ART use. Coordinating local BCP suppliers could help improve availability through addressing logistical challenges or reducing costs.

The presence of CD4 counts for the management of HIV patients in East Africa: a multicentred study.

New WHO guidance stipulates six-monthly CD4 testing and treatment initiation at CD4 less than 350. This study aimed to determine the presence of CD4 results in patient records across five care facilities in Kenya, and to identify factors associated with the presence of CD4 count. This is a cross-sectional study of consecutive outpatients. Participants completed self-reported outcomes of demographics, and both physical and mental health dimensions of quality of life and function; charts were reviewed for a CD4 count in the previous 13 months; 548 patients participated. For those diagnosed during the 13-month study period, 7.1% of the sample had no CD4 result on record. For those diagnosed prior to the study, 8.7% had no result. Multivariate logistic regression revealed that 30 days post-HIV diagnosis, facility and antiretroviral therapy use were associated with the odds of having a CD4 result on file. At six months, poverty and prevalence of multidimensional problems were associated with lack of CD4 result. For those diagnosed prior to the observation period, education level was associated with more infrequent CD4 counts, and facility and number of dependants were associated with odds of a CD4 result within six months. Our data suggest inconsistencies in CD4 results availability within and between facilities. Implementation of new guidance will require a shift in practice.

Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study.

BACKGROUND: Global health investment has reduced HIV mortality and transmission. However, little is known of patient-reported outcomes alongside ART rollout. This study aimed to measure wellbeing using patient-reported outcome measures (PROMS) among outpatients at PEPFAR-funded facilities. METHODS: In a multicentre 2 country cross-sectional study, adults attending 12 facilities in Kenya and Uganda gave self-reported data on quality of life (physical and mental wellbeing dimensions), functional and a measure of multidimensional problems (physical, psychological, social and spiritual). RESULTS: Among the 1,337 participants, multidimensional problems were more common in psychological, spiritual and social domains than in physical. In multivariable analysis using GEE to adjust for facility effect, the mental health subscale of quality of life was lower for people with limited functional status (B = -5.27, 95% CI -5.99, 1. -4.56 p < 0.001) and higher for wealthier people (B = 0.91, 95% CI 0.48, 1.33, p < 0.001). The physical health subscale of quality of life was lower for those with limited functional status (B = -8.58, 95% CI -9.46 to -7.70, p < 0.001) and those who had a caregiver present (B = -1.97, 95% CI -3.72 to -0.23, p = 0.027), higher for wealthier people (B = 1.14, 95% CI 0.65, 1.64, p < 0.001), and positively associated with CD4 count (B = 1.61, 95% CI 1.08-2.14, p < 0.001). Multidimensional problems were more burdensome for people with limited functional status (B = -2.06, 95% CI -2.46 to -1.66, p < 0.001), and less burdensome with more education (B = 0.63, 95% CI 0.25-1.00, p = 0.001) or ART use (B = 0.94, 95% CI 0.34-1.53, p = 0.002). CONCLUSIONS: Multidimensional problems are highly prevalent, and worse with declining function. Importantly, ART use does not appear to be protective for self-reported physical and mental dimensions of quality of life. Assessment and management of self-reported wellbeing must form part of HIV care and treatment services to ensure maximum benefit from ART investment.

Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures.

BACKGROUND: Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. METHODS: Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. RESULTS: Among 461 participants across all countries, subscale "social and family wellbeing" had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G + Pal with POS (0.66). CONCLUSIONS: The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis.

Palliative care-related self-report problems among cancer patients in East Africa: a two-country study.

PURPOSE: Palliative care-related problems have not been measured in Africa in line with the WHO definition. This study aimed to measure the three-day period intensity of multidimensional problems (physical, psychological, social, and spiritual) among advanced cancer patients in Kenya and Uganda. METHODS: Adults with advanced malignant disease gave self-report data to the African Palliative Outcome Scale (POS). RESULTS: Among 210 respondents, more than half had an underlying HIV diagnosis (51.9 %). The worst ranked POS items were pain and information. In three multivariable ordinal logistic regression models with the 3 POS factors as dependent variables, for the first model (factor 1 physical and psychological well-being), as age increased, the well-being also improved (B = 0.022, p = 0.037), and as physical function score worsened, factor score also worsened (B = -0.685, p < 0.001). In the second model (factor 2 interpersonal well-being), a trend toward significance was found for gender, with being male predicting a higher (better) factor score (B = 0.502, p = 0.067). For the third model (factor 3 existential and spiritual), increasing age was predictive of higher (better) factor score (B = 0.023, p = 0.032), and worsening function was predictive of lower (worse) factor score (B = -0.543, p < 0.001). CONCLUSIONS: This novel data revealed pain and information to plan for the future to affect patients most severely, underlining the importance of analgesia and social support. HIV infection did not affect the level of need. Our data suggest increasing need as function declines; therefore, home-based models with adequate family support are essential.

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.

BACKGROUND: World Health Organization's essential drugs list can control the highly prevalent HIV-related pain and symptoms. Availability of essential medicines directly influences clinicians' ability to effectively manage distressing manifestations of HIV. AIM: To determine the availability of pain and symptom controlling drugs in East Africa within President's Emergency Plan for AIDS Relief-funded HIV health care facilities. DESIGN: Directly observed quantitative health facilities' pharmacy stock review. We measured availability, expiration and stock-outs of specified drugs required for routine HIV management, including the World Health Organization pain ladder. SETTING: A stratified random sample in 120 President's Emergency Plan for AIDS Relief-funded HIV care facilities (referral and district hospitals, health posts/centres and home-based care providers) in Kenya and Uganda. RESULTS: Non-opioid analgesics (73%) and co-trimoxazole (64%) were the most commonly available drugs and morphine (7%) the least. Drug availability was higher in hospitals and lower in health centres, health posts and home-based care facilities. Facilities generally did not use minimum stock levels, and stock-outs were frequently reported. The most common drugs had each been out of stock in the past 6 months in 47% of facilities stocking them. When a minimum stock level was defined, probability of a stock-out in the previous 6 months was 32.6%, compared to 45.5% when there was no defined minimum stock level (χ (2) = 5.07, p = 0.024). CONCLUSION: The data demonstrate poor essential drug availability, particularly analgesia, limited by facility type. The lack of strong opioids, isoniazid and paediatric formulations is concerning. Inadequate drug availability prevents implementation of simple clinical pain and symptom control protocols, causing unnecessary distress. Research is needed to identify supply chain mechanisms that lead to these problems.

Public preferences and priorities for end-of-life care in Kenya: a population-based street survey.

BACKGROUND: End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. METHODS: Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. RESULTS: 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. CONCLUSION: This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens' preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home.

Research into palliative care in sub-Saharan Africa.

Roughly half a million people die of cancer in sub-Saharan Africa every year. Despite rapid expansion of palliative care for cancer, coverage remains woefully inadequate. The WHO public health strategy for palliative care aims to increase access to palliative care services through its integration into health-care systems. We present the available evidence for the four WHO strategy pillars of policy, education, drug availability, and implementation, and propose a fifth pillar of research activity to stimulate improvement of care. Increased attention to the generation of research evidence is essential to achieve quality and coverage of appropriate palliative care for patients with advanced cancer in sub-Saharan Africa. The use of locally validated, patient-reported outcome measures is an important advance in the measurement and improvement of care and patient wellbeing. Palliative care for patients with cancer in Africa currently receives far less research attention than does palliative care for patients with HIV/AIDS, but in view of projected increasing cancer incidence in the region, generation of local evidence to inform and allow assessment of palliative care for patients with cancer is urgently needed.