Eve Namisango

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.

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 (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.

How to analyze palliative care outcome data for patients in Sub-Saharan Africa: an international, multicenter, factor analytic examination of the APCA African POS.

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.

Pain among ambulatory HIV/AIDS patients: multicenter study of prevalence, intensity, associated factors, and effect.

UNLABELLED This study aimed to determine the prevalence, intensity, associated factors, and effect of pain among ambulatory HIV/AIDS patients. Three-hundred two adult ambulatory HIV/AIDS patients were consecutively recruited from HIV/AIDS outpatient clinics at 2 teaching hospitals in Uganda. The presence and intensity of pain were self-reported using the Brief Pain Inventory (BPI); symptom data were collected using the Memorial Symptom Assessment Scale (MSAS-SF); and quality of life (QOL) was assessed using the Medical Outcome Scale-HIV. Forty-seven percent reported pain in the 7 days prior to the survey and pain was a symptom at the time of diagnosis for 68%. On the 0 to 10 numeric scale, 53% reported mild pain (1-4 rating), 20% reported moderate pain (5-6 rating) while 27% reported severe pain (7-10 rating). Gender was not associated with pain intensity, but reduced functional performance, increasing number of symptoms, advanced HIV disease , physical symptom distress (MSAS-SF), and number of health comorbidities were significantly associated with pain intensity (P < .04). Increasing pain intensity was associated with greater functional ability impairment (BPI functional interference index) and poorer QOL. Pain is a common symptom among ambulatory HIV/AIDS patients and has a debilitating effect on QOL. There is a significant unmet need for pain relief in the population. PERSPECTIVE This article discusses the characteristics and effect of pain on function and QOL in East African patients. It also contributes information on characteristics of HIV/AIDS adult patients in the East Africa demonstrating the aspects in which pain is similar across different cultures.

Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: study protocol

BackgroundA 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/DesignThis 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).DiscussionThis 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.

Palliative Care Research in Africa: Consensus Building for a Prioritized Agenda

CONTEXT Palliative care research in Africa is in its relative infancy, with dedicated financial support extremely limited. Therefore, setting research priorities to optimize use of limited resources is imperative. OBJECTIVES To develop a prioritized research agenda for palliative care in Africa. METHODS We used a two-stage process involving palliative care professionals and researchers: 1) generation of an initial topic list at a consultative workshop of experts and 2) prioritization of that list using a consensus development process, the nominal group technique. RESULTS Phase 1: 41 topics were generated across five groups, with several topics nominated in more than one group. Phase 2: 16 topics and three broad thematic areas were identified. The two most prioritized topics within each of the three themes were the following: Theme 1: patient, family, and volunteers-1) care outcomes and the impact of palliative care as perceived by patients and caregivers and 2) palliative care needs of children; Theme 2: health providers-1) impact of palliative care training on care and practice and 2) integration of palliative care and antiretroviral therapy services; and Theme 3: health systems-1) palliative care needs assessments at the micro-, meso-, and macro-levels and 2) integration of palliative care into health systems and educational curricula. CONCLUSION Consensus-based palliative care topics determined by the study can assist researchers in optimizing limited research capacities by focusing on these prioritized areas. Subsequent to the identification and publication of the research agenda, concrete steps will be undertaken by the African Palliative Care Research Network and other partners to help implement it.

Multidimensional Patient-Reported Problems within Two Weeks of HIV Diagnosis in East Africa: A Multicentre Observational Study

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.

Best practices in developing a national palliative care policy in resource limited settings: lessons from five African countries.

Given the high unmet need for palliative care in Africa and other resource limited settings, it is important that countries embrace the public health approach to increasing access through its integration within existing healthcare systems. To give this approach a strong foundation that would ensure sustainability, the World Health Organisation urges member states to ensure that policy environments are suitable for this intervention. The development, strengthening, and implementation of national palliative care policies is a priority. Given the lack of a critical mass of palliative care professionals in the region and deficiency in documenting and sharing best practices as part of information critical for regional development, policy development becomes a complex process. This article shares experiences with regard to best practices when advocating the national palliative care policies. It also tells about policy development process, the important considerations, and cites examples of policy content outlines in Africa.

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

BackgroundGlobal 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.MethodsIn 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).ResultsAmong 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).ConclusionsMultidimensional 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.

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.