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Background Early detection and prompt access to quality treatment and palliative care are critical for good breast cancer outcomes. Interventions require understanding of identified barriers and facilitators to care. A hermeneutic phenomenological approach, whose purpose is to describe feelings and lived experiences of participants, can expand the existing scope of understanding of barriers and facilitators in accessing breast cancer care in Kenya. Methods This is qualitative research applying focus groups and a hermeneutic phenomenological approach to identify barriers and facilitators to breast cancer care from the knowledge, perceptions, and lived experiences of women with and without a diagnosis of breast cancer in Kenya. We conducted four focus group discussions with 6–11 women aged 30–60 years in each. Groups were classified according to breast cancer diagnosis and socioeconomic status. The transcribed discussions were coded independently by two investigators. Together they reviewed the codes and identified themes. Results The key barriers were costs, inadequate knowledge, distance to health facilities, communication with health providers, medicines stockouts, long waiting periods, limited or no counseling at diagnosis, patient vulnerability, and limited access to rehabilitation items. Facilitators were dependable social support, periodical access to subsidized awareness, and early detection services and friendly caregivers. We found no marked differences in perceptions between groups by socioeconomic status. Conclusion There is need for targeted awareness and education for health providers and the public, early detection services with onsite counseling and cost mitigation. Support from the society and religious organizations and persons may be leveraged as adjuncts to conventional management. Further interpretations are encouraged. Implications for Practice Continuing cancer education for health providers in technical skills for early detection, treatment, and survivorship care, as well as nontechnical skills like communication, and an understanding of their patients’ preferences and socioeconomic status may guide individualized management plans and positively affect patient experiences. Patients and the general public also need education on cancer to avoid misconceptions and inaccuracies that perpetuate fear, confusion, delayed presentation for treatment, and stigma. Critical analysis of the cancer care value chain and processes, development, and implementation of interventions to reduce costs while streamlining processes may improve client experiences.

PURPOSE By 2025, Kenya is estimated to experience a two-thirds increase in the incidence of breast cancer. Local research is necessary to generate evidence to inform policy, public health, and medical practice. There have been no longitudinal cohort studies in sub-Saharan Africa of women with and without breast cancer. Our aim is to assess the feasibility of conducting cohort studies in Kenya that consider clinical characteristics, socioeconomic factors, and self-care behaviors. METHODS We initiated a short-term follow-up cohort study of women with and without a diagnosis of breast cancer with baseline face-to-face data collection and one follow-up interview (at approximately 3 months by telephone). We developed tailored instruments to capture demographics, socioeconomic factors, breast cancer risk, ability to identify breast cancer symptoms, treatments received for breast cancer, and quality of life of survivors. RESULTS We recruited 800 women between the ages of 20 and 60 years and successfully collected baseline data. Completeness of the data was high for demographic variables, but there was a larger proportion of missing information for specific variables required for assessing breast cancer risk. Respondents were able to complete standardized instruments to assess breast cancer knowledge among those without breast cancer and identification of symptoms among survivors. We were able to successfully contact approximately 80% of the participants for follow-up. CONCLUSION This short-term follow-up study provides evidence that women can be successfully tracked and contacted for follow-up in the Kenyan setting and offers lessons to establish future longitudinal cohorts to identify approaches to improve breast cancer outcomes.

Tuberculosis illness is associated with uncertain outcomes, and has high prevalence among people living with HIV. The new World Health Organization's End TB strategy specifies person-centred symptom management and psychosocial support alongside treatment within its pillars and components. There is a paucity of research to inform an effective care response in Kenya in terms of self-reported outcomes. We aimed to measure the three day period intensity of problems and concerns (physical, psychological, social and spiritual), and identify predictors of problems and concerns, among HIV patients attending outpatient care. We conducted a cross-sectional self-report quantitative study among adult (aged at least 18 years) patients with confirmed HIV diagnosis, and aware of their diagnosis and attending HIV outpatient care in Kenya. Multi-dimensional palliative care problems and concerns were collected using African Palliative Outcome Scale (APOS). Ordinal logistic regression assessed the association of multi-dimensional problems and concerns controlling for demographic variables (age, gender, education and wealth) and clinical variables (WHO clinical stage, HIV treatment status, TB treatment status, and CD4 count). We recruited N = 400 participants. N = 61 (15.64%) were on TB treatment. The items with worst score responses were help and advice to plan for the future (52.5%), ability to share feelings (46.25%), at peace (30.75%) pain (27%) and life worthwhile (18.75%). TB treatment status was associated with lower (worse) score for APOS total score (odds ratio .59, 95% CI .36 to .99; P = 0.046) and factor 3(existential and spiritual wellbeing: .55, .32 to .92; p = 0.023). Interestingly higher CD4 count was predictive of lower (worse) factor 3 outcomes (existential and spiritual wellbeing: .84, 95% CI 73 to .97; p = 0.014). This study informs the new WHO End TB policy with novel data on specific clinical needs. This calls for holistic symptom assessment, person-centred care and holistic management to respond positively to the End TB strategy.

We conducted in Kenya a mixed-methods randomised controlled trial (RCT) of a nurse-led palliative care intervention integrated with anti-retroviral therapy (ART) provision for the management of HIV. Here we report qualitative findings showing increased resistance to HIV-associated stigma among trial participants. A mixed method design was chosen to enable identification of the active ingredients of the intervention and exploration of participants’ experiences of receiving the intervention. The RCT was conducted from July 2011 to November 2012 in a community hospital in the city of Mombasa, Kenya, with a sample of 120 adults with HIV on ART. Thirty participants were purposively selected to take part in a qualitative exit interview, based on study arm and mental health outcome. Inductive thematic analysis revealed increased resistance to HIV-associated stigma in both the intervention and control groups. Specifically, patients in both groups described benefit from the social support, compassionate care, and open and respectful communication they received through study participation. Participants described improved self-image, increased access to social agency, and increased resistance to HIV-associated stigma. Our findings suggest that there is potential to increase resistance to stigma through simple mechanisms of support, compassion, and improved communication in routine care. The self-reported impact of trial participation on stigma also has implications for future trials in populations in resource-constrained settings where stigma is common.

Experimental studies to test interventions for people living with HIV in low- and middle-income countries are essential to ensure appropriate and effective clinical care. The implications of study participation on outcome data in such populations have been discussed theoretically, but rarely empirically examined. We aimed to explore the effects of participating in a randomised controlled trial conducted in an HIV clinic in Mombasa, Kenya. We report qualitative data from the Treatment Outcomes in Palliative Care trial, which evaluated the impact of a nurse-led palliative care intervention for HIV positive adults on antiretroviral therapy compared to standard care. Participants in both arms attended five monthly quantitative data collection appointments. Post-trial exit, 10 control and 20 intervention patients participated in semi-structured qualitative interviews, analysed using thematic analysis. We found benefit attributed to the compassion of the research team, social support, communication, completion of patient reported outcome measures (PROMs) and material support (transport reimbursement). Being treated with compassion and receiving social support enabled participants to build positive relationships with the research team, which improved mental health and well-being. Open and non-judgmental communication made participants feel accepted. Participants described how repeated completion of the PROMs was a prompt for reflection, through which they began to help themselves and self-care. Participant reimbursements relieved financial hardship and enabled them to fulfil their social responsibilities, enhancing self-worth. These findings emphasise the importance of compassion, support and effective communication in the clinical encounter, particularly in stigmatised and isolated populations, and the potential of the integration of simple PROMs to improve patient outcomes. Participation in research has unexpected positive benefits for participants, which should be taken into account when designing research in similar populations. Researchers should be aware of the effects of financial reimbursement and contact with researchers in isolated and impoverished communities.

Context Although quality end-of-life care provision is an international public health issue, the majority of evidence is not generated in low- and middle-income countries that bear a disproportionate burden of progressive illnesses. Objectives To identify the priorities and preferences of the Namibian public for end-of-life care. Methods Using a cross-sectional study design, data were collected in the country's capital, Windhoek, from November to December 2010. Results In total, 200 respondents were recruited. The mean age was 27 years (SD 7.5; range 18–69), with nearly all ( n = 199; 99.5%) expressing a religious affiliation. Being in pain was reported as the most concerning of nine common end-of-life symptoms and problems ( n = 52; 26.1%), and the most important care-related aspect was having as much information as wanted ( n = 144; 72%). The majority (64%) would want their end-of-life care to focus on improving their quality of life rather than extending it, with 40% not wanting to know if they had limited time left to live. Hospital ( n = 96; 48%) and home ( n = 64; 32%) were the most preferred places of death. The most important end-of-life priority was keeping a positive attitude ( n = 128; 64%). Having had a close relative or friend diagnosed with a serious illness was associated with a 2.3 increase in the odds of preference for a hospital death (odds ratio = 2.34, P = 0.009, 95% CI 1.23–4.47). Conclusion This study identified a number of areas that need to be pursued in future research to explore factors that may affect patient preferences and priorities in end-of-life care in Namibia.

Background Breast cancer is a leading cause of cancer mortality among women in Kenya. Regular screening and optimal treatments can reduce the burden from this disease, but the cost of health care is a barrier to accessing these services. The objective of this study is to assess barriers to breast cancer screening and treatment services, with special emphasis on economic aspects. Methods We recruited 400 women with and 400 women without a diagnosis of breast cancer and conducted face-to-face interviews. We developed tailored instruments to capture demographics, socioeconomic factors, employment status, insurance coverage, barriers to seeking care, and treatment cost. Qualitative feedback was also sought from the participants. Results Among women without breast cancer, the most commonly cited impediments to receiving medical care were cost (46.3 %) and transportation (23.3 %). For women with breast cancer, 53.8 % reported that they had to forego care because of cost and 91.2 % reported that their diagnosis impacted household financial wellbeing. Additionally, about half the women (44.9 %) with insurance coverage indicated that the reimbursement received for medical costs was less than they expected to receive. Conclusion For women both with and without diagnosed breast cancer, cost was a major concern in seeking medical services. Affordability and access to breast cancer screening and treatment need to be improved. Providing more comprehensive insurance coverage is a key solution.

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.

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.

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 ( χ2 = 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.

IntroductionA catastrophic 35% increase in the burden of breast cancer in Kenya has been predicted by 2025. Mitigating this burden is critical, and local research is necessary to generate the evidence to inform policy, public health and medical practice. Most of the knowledge available has been derived from studies in high-income countries that are not directly applicable due to economic, social, cultural and ethnic differences. At the time of writing this paper, we had no knowledge of any longitudinal cohort studies in sub-Saharan Africa of both breast cancer survivors and a matching cohort of women who have never had a diagnosis of cancer. We aim to assess feasibility of cohort studies in Kenya that consider clinical characteristics social determinants and individual health seeking behaviour.Methods and analysisThis study aims to inform best practices for initiating a longitudinal cohort study in Kenya. It is a two-pronged, prospective mixed methods study of women with and without a diagnosis of breast cancer with baseline data collection and one follow-up data collection approximately 3 months later by telephone. Quantitative and qualitative data will be collected concurrently, analysed separately and together to enrich understanding of concepts by triangulation. We aim to include 800 women aged 30–60 years: 400 in the survivorship cohort and 400 in the non-cancer cohort. Two focus group discussions from each cohort will be carried out to enhance understanding of concepts and to guide recommendations.Ethics and disseminationIndependent ethical approval was obtained from Kenyatta National Hospital-University of Nairobi Ethics and Research Committee and the Research Triangle Institute International. Only consenting participants will be enrolled. Counselling support, debriefing discussions and referrals for formal support services will be available for both participants and research assistants. Findings will be disseminated through publications, websites and presentations.

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

Despite the life threatening nature of an HIV diagnosis and the multidimensional problems experienced by this patient population during antiretroviral therapy, the effectiveness of a palliative care approach for HIV positive patients on ART is as yet unknown. A randomised controlled trial (RCT) was conducted in a sample of 120 HIV positive patients on ART in an urban clinic in Mombasa, Kenya. The intervention was a minimum of seven sessions of multidimensional, person-centred care, given by HIV nurses trained in the palliative care approach over a period of 5 months. Rates of recruitment and refusal, the effectiveness of the randomisation procedure, trial follow-up and attrition and extent of missing data are reported. 120 patients (60 randomised to control arm, 60 randomised to intervention arm) were recruited over 5.5 months, with a refusal rate of 55.7%. During the study period, three participants died from cancer, three withdrew (two moved away and one withdrew due to time constraints). All of these patients were in the intervention arm: details are reported. There were five additional missing monthly interviews in both the control and intervention study arm, bringing the total of missing data to 26 data points (4.3%). The quality and implications of these data are discussed extensively and openly, including the effect of full and ethical consent procedures, respondent burden, HIV stigma, accurate randomisation, patient safety and the impact of the intervention. Data on recruitment randomisation, attrition and missing data in clinical trials should be routinely reported, in conjunction with the now established practice of publishing study protocols to enhance research integrity, transparency and quality. Transparency is especially important in cross cultural settings, in which the sources of funding and trial design are often not based in the country of data collection. Findings reported can be used to inform future RCTs in this area. Clinicaltrials.gov NCT01608802 .

BackgroundDespite 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.MethodsCross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-Pal and POS measures.ResultsAmong 461 participants across all countries, subscale "social and family wellbeing" had highest (worst) score. Significant country effect showed lower (better) scores for Uganda on FACIT core scale, Personal, Emotional and Family Well-Being subscales. 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 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).ConclusionsThe data reveal worst 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.

There is a great need for end-of-life care in Africa due to the high incidence of life-threatening illness. However, little is known about the views of the African public on end-of-life care. Therefore, the authors piloted a street survey in Nairobi (Kenya), where adult pedestrians were randomly interviewed about local preferences and priorities for end-of-life care. Two of 19 people consented but later withdrew, one because of religious beliefs and one because of the sensitive nature of the subject. Interviews took approximately 15 min. Interviewers' field notes revealed no major problems with content, but identified tribal and ethnic origin as a sensitive topic, and stressed the usefulness of the presence of a 'buddy' for the safety of the interviewer. One participant found it upsetting to talk about the topic and did not want to be informed about a terminal illness. The 16 remaining participants said the interview was not distressing and answered all questions. All 17 had experienced the death of a close relative in the last 5 years. Methodological and implementation lessons have been learnt and the results of the pilot suggest street surveying is a feasible and acceptable method to examine public opinion on end-of-life care in Africa, provided people are able to freely decline to respond and safety measures are in place for interviewer. This novel pilot offers a new opportunity for health research in Africa.

BackgroundEnd-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.MethodsPopulation-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 Results201 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.ConclusionThis 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.

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. Adults with advanced malignant disease gave self-report data to the African Palliative Outcome Scale (POS). 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

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

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.

OBJECTIVES: We aimed to determine for the first time the prevalence and severity of multidimensional problems in a population newly diagnosed with HIV at outpatient clinics in Africa. METHODS: Recently diagnosed patients (within previous 14 days) were consecutively recruited at 11 HIV clinics in Kenya and Uganda. Participants completed a validated questionnaire, the African Palliative Outcome Scale (POS), with three underpinning factors. Ordinal logistic regression was used to evaluate risk factors for prevalence and severity of physical, psychological, interpersonal and existential problems. RESULTS: There were 438 participants (62% female, 30% with restricted physical function). The most prevalent problems were lack of help and advice (47% reported none in the previous 3 days) and difficulty sharing feelings. Patients with limited physical function reported more physical/psychological (OR = 3.22) and existential problems (OR = 1.54) but fewer interpersonal problems (OR = 0.50). All outcomes were independent of CD4 count or ART eligibility. CONCLUSIONS: Patients at all disease stages report widespread and burdensome multidimensional problems at HIV diagnosis. Newly diagnosed patients should receive assessment and care for these problems. Effective management of problems at diagnosis may help to remove barriers to retention in care.

Introduction The majority of care for the 22.9 million people with HIV in Sub-Saharan Africa is provided by HIV outpatient services. While the palliative care needs of HIV patients are well documented, it is not known how well HIV outpatient services meet these needs and evidence to improve service provision is lacking. Aims and Methods To explore the care provided by outpatient HIV services in Uganda and Kenya and identify ways of improving care to meet patient and family needs. Qualitative interviews were conducted with patients, carers and staff at 12 HIV outpatient facilities (six in Kenya, six in Uganda), translated into English and analysed thematically. Results 189 people were interviewed (83 patients, 47 caregivers, 59 staff). Positive aspects of care related to staff attributes and teamwork, holistic care, medication provision and patient education. Gaps/challenges in care related to service efficiency, paediatric services, reaching rural areas, poverty and sustaining services financially. Services struggled to meet patient demand through lack of staff, resources and space. Drug availability was variable, but when good was highly valued by service users. Recommendations included improving existing services (organisation, medication provision and staff training) and providing additional services and outreach (transport, public health initiatives, nutritional programmes, financial support and care for extended family). Conclusions Outpatient services struggled to meet the multidimensional needs of people living with HIV in the face of significant resource challenges. Findings can be used to improve outpatient care and direct financial resources. Collaboration with palliative care services may help to improve HIV outpatient care.

Summary 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.

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.