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Abstract Background End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa. Methods An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010. Results 168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use. Conclusion This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa.

Abstract Background Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures. Methods A web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire. Results Overall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs. Conclusions Professionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care.

Abstract 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 curret 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.

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.

Context: Between 1998 and 2021, the Open Society Foundations (OSF) network invested around US$50 million in supporting the emerging field of palliative care worldwide, funding different approaches and interventions to advance its objective of putting palliative care on the global public health agenda., Objective: To describe six approaches that were instrumental to the successes of Open Society Foundations' support in building the global field of palliative care. A robust discussion of lessons learnt is unfortunately not possible because Open Society Foundations did not commission a rigorous evaluation of the impacts of its investments., Methods: This article describes these six approaches: Investing in versatile palliative care leaders at national and regional level; investing in palliative care champions within the OSF network; proactively engaging the World Health Organization (WHO) in efforts to promote palliative care; developing tools and skills to improve palliative care financing; using a human rights-based approach; and supporting self-advocacy by people with palliative care needs., Results: Deep, long-term investments in national and regional champions from the palliative care community and OSF's own network built palliative care leaders with well-rounded skills, knowledge and opportunities to develop their own networks. The active engagement and involvement of the WHO in efforts to advance palliative care enhanced the credibility of palliative care as a discipline as well its champions, whereas the human rights approach resulted in more diverse strategies to overcome barriers to palliative care. The focus on palliative care financing and self-advocacy showed significant promise for impact., Discussion: The approaches and strategies described helped a nascent palliative care field develop into a health service that is increasingly integrated into public health systems. Other funders and national governments can build on OSF's long term support for the palliative care field and support further integration of palliative care within public health to increase access., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Evidence on patient-reported outcomes of newly diagnosed HIV patients is scarce, and largely cross-sectional. This prospective cohort study describes the prevalence of, and changes in, patient-reported outcomes in the three months after HIV diagnosis, in 11 HIV outpatient centres in Kenya and Uganda., Methods: Adults were recruited within 14 days of result, completing self-report measures four times at monthly intervals. Multilevel mixed-effects linear regression (quality of life continuous outcomes) and ordinal logistic regression (symptoms and concerns categorical outcomes) modelled change over time, with repeated observations grouped within individuals adjusted for demographic/clinical characteristics, and multiple imputation for missing data., Results: 438 adults were enrolled and 234 (53·4%) initiated ART. Improvement was found for MOS-HIV physical health (from 46·3 [95% CI 45·1-47·3], to 53·7 [95% CI 52.8-54·6], p < 0.001), and mental health (from 46·4 [95% CI 45·5-47·3] to 54·5 [95% CI 53·7-55·4], p < 0.001). POS subscale 'interpersonal problems' improved but remained burdensome (OR = 0·91, 95% CI = 0·87-0·94, p < 0.001; 22·7% reported severe problems at final time point). The scores for the existential POS subscale (OR = 0·95, 95% CI = 0.90-1·00, p = 0.056) and physical/psychological problems POS subscale (OR = 0·97, 95% CI = 0.92-1·02, p = 0.259) did not improve. Participants who initiated ART had worsening physical/psychological (OR = 0·64, 95% CI = 0·41-0·99, p = 0·045) and interpersonal problems (OR = 0·64, 95% CI = 0·42-0·96, p = 0·033)., Conclusion: Although some self-reported outcomes improve over time, burden of interpersonal problems remains substantial and existential concerns do not improve.

Context: Sub-Saharan Africa faces an increasing incidence and prevalence of life-limiting and life-threatening conditions. These conditions are associated with a significant burden of pain linked to high morbidity and disability that is poorly assessed and undertreated. Barriers to effective pain management partly relate to lack of access to opioid analgesia and challenges in their administration., Objectives: To identify country-specific and broader regional barriers to access, as well as the administration of opioids, and generate recommendations for advancing pain management in Southern Africa., Methods: A parallel mixed methods design was used across three countries: Mozambique, Swaziland, and Zimbabwe. Three activities were undertaken: 1) a review of regulatory and policy documentation, 2) group interviews, and 3) a self-administered key informant survey., Results: Barriers to accessing opioid analgesics for medical use include overly restrictive controlled medicines' laws; use of stigmatizing language in key documents; inaccurate actual opioid consumption estimation practices; knowledge gaps in the distribution, storage, and prescription of opioids; critical shortage of prescribers; and high out-of-pocket financial expenditures for patients against a backdrop of high levels of poverty., Conclusion: Policies and relevant laws should be updated to ensure that the legislative environment supports opioid access for pain management. Action plans for improving pain treatment for patients suffering from HIV or non-communicable diseases should address barriers at the different levels of the supply chain that involve policymakers, administrators, and service providers., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

The Girl Summit held in 2014 aimed to mobilise greater effort to end Female Genital Mutilation (FGM) within a generation, building on a global movement which viewed the practice as a severe form of violence against women and girls and a violation of their rights. The UN, among others, endorse "comprehensive" strategies to end FGM, including legalistic measures, social protection and social communications. FGM is a sensitive issue and difficult to research, and rapid ethnographic methods can use existing relations of trust within social networks to explore attitudes towards predominant social norms which posit FGM as a social necessity. This study used Participatory Ethnographic Evaluation Research (PEER) to understand young men's (18-25 years) perceptions of FGM, demand for FGM among future spouses, and perceptions of efforts to end FGM in a small town in West Pokot, Kenya, where FGM is reported to be high (between 85% to 96%). Twelve PEER researchers were recruited, who conducted two interviews with their friends, generating a total of 72 narrative interviews. The majority of young men who viewed themselves as having a "modern" outlook and with aspirations to marry "educated" women were more likely not to support FGM. Our findings show that young men viewed themselves as valuable allies in ending FGM, but that voicing their opposition to the practice was often difficult. More efforts are needed by multi-stakeholders - campaigners, government and local leaders - to create an enabling environment to voice that opposition., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Maternal and neonatal morbidity and mortality in Low Income Countries, especially in sub-Saharan Africa involves numerous interrelated causes. The three-delay model/framework was advanced to better understand the causes and associated Contextual factors. It continues to inform many aspects of programming and research on combating maternal and child morbidity and mortality in the said countries. Although this model addresses some of the core areas that can be targeted to drastically reduce maternal and neonatal morbidity and mortality, it potentially omits other critical facets especially around primary prevention, and pre- and post-hospitalization continuum of care., Discussion: The final causes of Maternal and Neonatal mortality and morbidity maybe limited to a few themes largely centering on infections, preterm births, and pregnancy and childbirth related complications. However, to effectively tackle these causes of morbidity and mortality, a broad based approach is required. Some of the core issues that need to be addressed include:-i) prevention of vertically transmitted infections, intra-partum related adverse events and broad primary prevention strategies, ii) overall health care seeking behavior and delays therein, iii) quality of care at point of service delivery, and iv) post-insult treatment follow up and rehabilitation. In this article we propose a five-pronged framework that takes all the above into consideration. This frameworks further builds on the three-delay model and offers a more comprehensive approach to understanding and preventing maternal and neonatal morbidity and mortality in Low Income Countries, Conclusion: In shaping the post 2015 agenda, the scope of engagement in maternal and newborn health need to be widened if further gains are to be realized and sustained. Our proposed five pronged approach incorporates the need for continued investment in tackling the recognized three delays, but broadens this to also address earlier aspects of primary prevention, and the need for tertiary prevention through ongoing follow up and rehabilitation. It takes into perspective the spectrum of new evidence and how it can be used to deepen overall understanding of prevention strategies for maternal and neonatal morbidity and mortality in LICS.

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.

Context: Although sub-Saharan Africa suffers the greatest burden of progressive illness, there are few outcome measures with adequate properties to measure needs and outcomes., Objectives: To examine the psychometric properties of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) among people receiving palliative care in three African countries., Methods: Adult patients in South Africa, Kenya, and Uganda gave self-reported data to the core FACIT-G plus Pal subscale. Data were subjected to factor analysis, corrected item-total correlations, and Cronbach's α for full scale and subscales., Results: The resulting four factors bear a strong similarity to the original Functional Assessment of Cancer Therapy-General in our sample of 461: physical symptoms, functional well-being, friends and family, and emotional well-being. Cronbach's α for the full 27-item scale was 0.90 and for the physical well-being, social/family well-being, emotional well-being, and functional well-being subscales, it was 0.83, 0.78, 0.80, and 0.87, respectively. Varimax rotation of the 19-item FACIT-Pal scale showed three clear interpretable factors. Factor 1, a sense of purpose and meaning in life; Factor 2, physical symptoms; and Factor 3, social integration. For the 19-item FACIT-Pal, Cronbach's α was 0.81, and individual corrected item-total correlations ranged from 0.24 to 0.61. Cronbach's α for the eight items comprising Factor 1 (meaning in life) was 0.83. For the other two factors, it was 0.70 (physical symptoms, six items) and 0.68 (social integration, three items)., Conclusion: The FACIT-Pal is a reliable multidimensional scale for people with life-limiting incurable diseases in sub-Saharan Africa, and the observed factors are interpretable and clinically meaningful., (Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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.

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.

Background: Symptom distress is poorly described in persons living with HIV, with limited attention paid to physical and psychological symptom prevalence to inform optimal clinical care., Objectives: The study objective was to measure seven-day-period prevalence of symptoms among HIV-infected adult outpatients and determine if self-reported symptom burden is associated with antiretroviral therapy (ART), CD4 T-cell count, and clinical disease stage., Methods: Adult patients were consecutively recruited from HIV outpatient clinics at two referral and teaching hospitals in Uganda. Of 343 patients approached, 302 (88%) participated. Patients described symptoms during the previous week using the Memorial Symptom Assessment Scale Short Form, and level of physical functionality using the Karnofsky Performance Status (KPS) tool on the interview day., Results: A high symptom burden was reported, with the most prevalent being worry (94%), feeling sad (92%), hunger (82%), feeling nervous (75%), and feeling drowsy/tired (62%). Patients with KPS scores of <70 reported more symptoms (23 versus 10; F=289.68, P<0.001) and higher symptom distress (P<0.04 for all analyses). Neither ART nor CD4 T-cell count were associated with symptom burden. WHO clinical stage 4 was associated with psychological symptom burden (OR 2.94, P=0.011, CI 1.281-6.735). Men were more likely to experience higher symptom burden., Conclusion: In the ART era, ambulatory HIV/AIDS patients continue to experience a high physical and psychological symptom burden. For those with advanced disease, psychological symptoms are particularly important. It is important to be observant of gender differences in patterns of symptom distress in HIV outpatient care settings. The high prevalence of hunger warrants attention as it may compromise ART initiation and adherence to ART.

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.

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.

Background: Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services., Methods: Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically., Results: 189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful., Conclusions: The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain' in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids.

Context: The incidence of life-limiting progressive disease in sub-Saharan Africa presents a significant clinical and public health challenge. The ability to easily measure patient outcomes is essential to improving care., Objectives: The present study aims to determine the specific factors (if any) that underpin the African Palliative Care Association African Palliative Outcome Scale to assist the analysis of data in routine clinical care and audit., Methods: Using self-reported data collected from patients with HIV infection in eastern and southern Africa, an exploratory factor analysis was undertaken with 1337 patients; subsequently, a confirmatory analysis was done on two samples from separate data sets (n = 445)., Results: Using exploratory factor analysis initially, both two- and three-factor solutions were examined and found to meet the criteria for simple structure and be readily interpretable. Then using confirmatory factor analysis on two separate samples, the three-factor solution demonstrated better fit, with Goodness-of-Fit Index values greater than 0.95 and Normative Fit Index values close to 0.90. The resulting three factors were 1) physical and psychological well-being, 2) interpersonal well-being, and 3) existential well-being., Conclusion: This analysis presents an important new opportunity in the analysis of outcome data for patients with progressive disease. It has advantages over both the total scoring of multidimensional scaling (which masks differences between domains) and of item scoring (which requires repeated analyses). The three factors map well onto the underlying concept and clinical goals of palliative care, and will enable audit of facility care., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

WHO expects the burden of cancer in sub-Saharan Africa to grow rapidly in coming years and for incidence to exceed 1 million per year by 2030. As a result of late presentation to health facilities and little access to diagnostic technology, roughly 80% of cases are in terminal stages at the time of diagnosis, and a large proportion of patients have moderate to severe pain that needs treatment with opioid analgesics. However, consumption of opioid analgesics in the region is low and data suggest that at least 88% of cancer deaths with moderate to severe pain are untreated. Access to essential drugs for pain relief is limited by legal and regulatory restrictions, cultural misperceptions about pain, inadequate training of health-care providers, procurement difficulties, weak health systems, and concerns about diversion, addiction, and misuse. However, recent initiatives characterised by cooperation between national governments and local and international non-governmental organisations are improving access to pain relief. Efforts underway in Uganda, Kenya, and Nigeria provide examples of challenges faced and innovative approaches adopted and form the basis of a proposed framework to improve access to pain relief for patients with cancer across the region., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

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.

Context: Although pain and burdensome symptoms among HIV-infected persons can be effectively managed, the availability of opioids and other symptom-controlling drugs is a particular challenge in sub-Saharan Africa., Objectives: This study aimed to identify current drug availability and prescribing practices in 12 sub-Saharan African countries and to examine the barriers and potential facilitators for use of opioids and other key HIV/AIDS symptom-controlling drugs., Methods: This was a cross-sectional survey, integrating data from palliative care facilities and competent authorities within ministries of health in 12 African countries., Results: Of 62 responding facilities, problems were reported in accessing named nonopioids, with a small number of facilities unable to dispense them. Less than half the facilities were currently prescribing opioids of any strength. Further problems were identified in terms of the availability and supply continuity of named antiemetics and anxiolytics. The data identified a number of systemic problems, suggesting that opioid supply issues are similar to less controlled drugs, such as antiemetics. Among competent authorities, there was no agreement on whether further opioid expansion was possible. Integration of data from care facilities and competent authorities highlighted a disparity in the understanding of the availability of specific drugs, with competent authorities naming drugs that were not listed by any responding facility in their respective country., Conclusion: This study shows that opioid expansion needs to balance supply and skills: Currently there are insufficient trained clinical personnel to prescribe, and supply is unreliable. Efforts to expand supply should ensure that they do not weaken current systems., (2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Palliative care has striven to be evidence-based and to measure and prove its outcomes, although the population we serve offers significant challenges in determining and measuring outcomes. Within low- and middle-income countries, there has been comparatively little outcome evidence in relation to the numbers of patients seen and the magnitude of need for palliative care. Here we report a novel collaborative effort to measure and improve outcomes for patients and families receiving palliative care in two sub-Saharan African countries., (Copyright 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

International health and drug regulatory authorities acknowledge that analgesics (especially opioids) are insufficiently available for pain management in many countries. In Africa, reported morphine consumption is far below the global mean, with multiple factors hampering opioid supply. Since 2006, the African Palliative Care Association has hosted three regional drug availability workshops across the continent to address this issue. Using an interactive format, the workshops have identified country-specific barriers to opioid and other essential medication accessibility before supporting participants to develop action plans to address recognized impediments. Despite multiple challenges, a number of successes have arisen from the implementation of the plans. However, key issues remain, including the introduction of supportive policy environments, effective educational initiatives, and measures to address supply-chain obstacles impeding drug availability., (Copyright 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Over the past few decades, there has been growing support for the idea that cancer needs an interdisciplinary approach. Therefore, the international cancer community has developed several strategies as outlined in the WHO non-communicable diseases Action Plan (which includes cancer control) as the World Health Assembly and the UICC World Cancer Declaration, which both include primary prevention, early diagnosis, treatment, and palliative care. This paper highlights experiences/ideas in cancer control for international collaborations between low, middle, and high income countries, including collaborations between the European Union (EU) and African Union (AU) Member States, the Latin-American and Caribbean countries, and the Eastern Mediterranean countries. These proposals are presented within the context of the global vision on cancer control set forth by WHO in partnership with the International Union Against Cancer (UICC), in addition to issues that should be considered for collaborations at the global level: cancer survival (similar to the project CONCORD), cancer control for youth and adaptation of Clinical Practice Guidelines. Since cancer control is given lower priority on the health agenda of low and middle income countries and is less represented in global health efforts in those countries, EU and AU cancer stakeholders are working to put cancer control on the agenda of the EU-AU treaty for collaborations, and are proposing to consider palliative care, population-based cancer registration, and training and education focusing on primary prevention as core tools. A Community of Practice, such as the Third International Cancer Control Congress (ICCC-3), is an ideal place to share new proposals, learn from other experiences, and formulate new ideas. The aim of the ICCC-3 is to foster new international collaborations to promote cancer control actions in low and middle income countries. The development of supranational collaborations has been hindered by the fact that cancer control is not part of the objectives of the Millennium Development Goals (MGGs). As a consequence, less resources of development aids are allocated to control NCDs including cancer.

The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activities in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.