Liz Gwyther

Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale

BackgroundDespite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study.MethodsValidation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearmans rank tests); Phase 3. Internal consistency (Cronbachs alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets).ResultsThe validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearmans rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbachs Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit.ConclusionsThe APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.

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.

Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study.

Objectives To explore the information needs of patients with progressive, life limiting disease and their family caregivers in South Africa and Uganda and to inform clinical practice and policy in this emerging field. Design Semistructured qualitative interview study. Setting Four palliative care services in South Africa and one in Uganda, covering rural, urban, and peri-urban locations. Participants 90 patients and 38 family caregivers enrolled in palliative care services; 28 patients had cancer, 61 had HIV infection (including 6 dual HIV/cancer diagnoses), and 1 had motor neurone disease. Results Five themes emerged from the data. (1) Information sources: a lack of information from general healthcare providers meant that patients and caregivers had to draw on alternative sources of information. (2) Information needs: patients and caregivers reported needing more information in the key areas of the causes and progression of the disease, its symptoms and treatment, and financial/social support. (3) Impact of unmet needs: poor provision of information had a detrimental effect on patients’ and caregivers’ ability to cope. (4) Communication: negative experiences of communication with general healthcare staff were reported (misinformation, secrecy, insensitivity). (5) Barriers to effective provision of information: barriers related to symptoms, culture, time constraints in hospital, and paternalism in general health care. Conclusions Lack of information was a major theme for both patients and carers, who had important unanswered questions relating to living with a progressive incurable disease. Evidence based recommendations for clinicians are presented, including the proactive provision of information tailored to individual patients and families.

Prevalence, burden, and correlates of physical and psychological symptoms among HIV palliative care patients in sub-Saharan Africa: an international multicenter study.

CONTEXT Despite HIV remaining life limiting and incurable, very little clinical research focus has been given to the prevalence and related burden of physical and psychological symptoms for those accessing palliative care. Despite evidence of problems persisting throughout the trajectory and alongside treatment, scant attention has been paid to these manageable problems. OBJECTIVES This study aimed to measure the seven-day period prevalence and correlates of physical and psychological symptoms, and their associated burden, in HIV-infected individuals attending palliative care centers in sub-Saharan Africa. METHODS Consecutive patients in five care centers across two countries completed the Memorial Symptom Assessment Scale-Short Form, with additional demographic and disease-oriented variables. RESULTS Two hundred twenty-four patients participated. The most common symptoms were pain in the physical dimension (82.6%) and worry in the psychological dimension (75.4%). Interestingly, 71.4% reported hunger. Women, and those with worse physical function, were more likely to experience burden. However, being on antiretroviral therapy (ART) was not associated with global, physical, or psychological symptom burden. CONCLUSION This study is the first to report physical and psychological symptom burden in HIV-infected populations receiving palliative care in sub-Saharan Africa. Despite increasing access to ART, these burdensome and manageable problems persist. The assessment of these problems is essential alongside assessment of ART virological outcomes.

Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report

Felicia Marie Knaul, Paul E Farmer*, Eric L Krakauer*, Liliana De Lima, Afsan Bhadelia, Xiaoxiao Jiang Kwete, Héctor Arreola-Ornelas, Octavio Gómez-Dantés, Natalia M Rodriguez, George A O Alleyne, Stephen R Connor, David J Hunter, Diederik Lohman, Lukas Radbruch, María del Rocío Sáenz Madrigal, Rifat Atun†, Kathleen M Foley†, Julio Frenk†, Dean T Jamison†, M R Rajagopal†, on behalf of the Lancet Commission on Palliative Care and Pain Relief Study Group‡

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.

‘Peace’ and ‘life worthwhile’ as measures of spiritual well-being in African palliative care: a mixed-methods study

BackgroundPatients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients’ spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations.MethodsThe study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items’ content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity.Results(1) Peace was interpreted according to the themes ‘perception of self and world’, ‘relationship to others’, ‘spiritual beliefs’ and ‘health and healthcare’. Life worthwhile was interpreted in relation to ‘perception of self and world’, ‘relationship to others’ and ‘identity’. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p < 0.001). Correlations with Spirit 8 items were weak to moderate.ConclusionsFindings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.

Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy

BackgroundPatients with HIV/AIDS on Antiretroviral Therapy (ART) suffer from physical, psychological and spiritual problems. Despite international policy explicitly stating that a multidimensional approach such as palliative care should be delivered throughout the disease trajectory and alongside treatment, the effectiveness of this approach has not been tested in ART-experienced populations.Methods/designThis mixed methods study uses a Randomised Controlled Trial (RCT) to test the null hypothesis that receipt of palliative care in addition to standard HIV care does not affect pain compared to standard care alone. An additional qualitative component will explore the mechanism of action and participant experience. The sample size is designed to detect a statistically significant decrease in reported pain, determined by a two tailed test and a p value of ≤0.05. Recruited patients will be adults on ART for more than one month, who report significant pain or symptoms which have lasted for more than two weeks (as measured by the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS)). The intervention under trial is palliative care delivered by an existing HIV facility nurse trained to a set standard. Following an initial pilot the study will be delivered in two African countries, using two parallel independent Phase III clinical RCTs. Qualitative data will be collected from semi structured interviews and documentation from clinical encounters, to explore the experience of receiving palliative care in this context.DiscussionThe data provided by this study will provide evidence to inform the improvement of outcomes for people living with HIV and on ART in Africa.ClinicalTrials.gov Identifier: NCT01608802

Pediatric Palliative Care in Sub-Saharan Africa: A Systematic Review of the Evidence for Care Models, Interventions, and Outcomes

CONTEXT The progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available. OBJECTIVES To systematically review the evidence for pediatric palliative care models, interventions, and outcomes to appraise the state of the science and inform best practice. METHODS A systematic review search strategy was implemented in eight electronic databases, the search results reported using a PRISMA statement, and findings tabulated. RESULTS In terms of evidence of palliative care provision and outcomes, only five articles were identified. These represent a small range of acute, community, and hospice care and offer some limited guidance on the development and delivery of services. CONCLUSION Pediatric palliative care is a pressing clinical and public health challenge in sub-Saharan Africa. Explicit evidence-based models of service development, patient assessment, and evidence for control of prevalent problems (physical, psychological, social, spiritual, and developmental) are urgently needed. Greater research activity is urgently required to ensure an evidence-based response to the enormous need for pediatric palliative care in sub-Saharan Africa.

The MVQOLI successfully captured quality of life in African palliative care: a factor analysis.

OBJECTIVE To examine the factor structure of the Missoula Vitas Quality of Life Index (MVQOLI) in palliative care patients in South Africa and Uganda and to assess the tools appropriateness for measuring quality of life (QOL) in this context. STUDY DESIGN AND SETTING Cross-sectional survey using the MVQOLI, a 26-item QOL measure containing five subscales (Function, Symptoms, Interpersonal, Well being, and Transcendent), in five palliative care services in South Africa and Uganda. RESULTS Two hundred eighty-five patients were recruited; mean age was 40.1 years; 197 (69.1%) were female; primary diagnoses were human immunodeficiency virus infection (80.7%) and cancer (17.9%). A five-factor solution, accounting for 55% of variance, presented the best model of fit. The factors corresponded relatively closely to the original subscales, with only 4 of the 20 items not loading on the factor corresponding to the appropriate subscale. Internal consistency was high (α=0.83). CONCLUSION We found evidence of five factors underpinning the MVQOLI in a large sample of South African and Ugandan palliative care patients. The five factors corresponded reasonably well to the original subscales, suggesting that it is a promising measure for use in this population. However, further testing of its psychometric properties, comprehensibility, and scoring require further research in sub-Saharan Africa.