Keletso Mmoledi

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.

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.

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.

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.

Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa:

Family caregivers are central to palliative care in sub-Saharan Africa. Yet although supporting caregivers requires a comprehensive understanding of caregiver burden, there has been little research into this topic in Africa. Using the Stress Process Model to investigate the burden experienced by caregivers in South Africa and Uganda, we interviewed 37 caregivers and analyzed the data thematically. Caregivers’ primary stressors related to day-to-day patient care and emotional support; secondary stressors included financial hardship, family responsibilities, and social isolation. Caregivers’ social, relational, spiritual, and psychological resources mediated the effects of these stressors. Strengthening one resource strengthened others, but the failure of one resource hindered other resources, exacerbating burden. In providing caregiver support, policymakers and service providers should focus on enhancing caregivers’ resources as well as alleviating their stressors.

Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa

Background Despite global clinical guidance that HIV patients should have multidimensional care integrated into their management, there has been very limited data to guide practice since the advent of treatment. This study aimed to determine the three-day period intensity of problems (physical, psychological, social and spiritual) among HIV patients receiving integrated palliative care in sub-Saharan Africa, and to identify associations with problem severity. Methods A sample of 230 consecutive adult patients attending five sites in South Africa and Uganda gave self-report data using a well-validated outcome scale. Multivariable regression models determine the association of patient characteristics with intensity of three scale factors. Results The most burdensome problems were (in descending order) pain, worry, symptoms, and adequate information to plan for the future. Interestingly, CD4 counts were available on file for only 59.1% of patients. In multivariate analyses, being cared for at home was associated with poorer physical/psychological factor score (B=−0.192, 95% CI −2.566 -0.464, p=0.005), while being on ART was associated with better factor score (B=0.187, 95% CI=0.424 23.80, p=0.005). For the existential/spiritual factor, being cared for at home was associated with a worse factor score (B=−0.306, 95% CI −2.776 −1.128, p<0.001). ART use was not associated with either the interpersonal or spiritual/existential factors. Discussion These self-report data reveal a high burden of both physical and psychological problems, and that communication from professionals is insufficient. Patients receiving home care may require additional support to enhance wellbeing, and treatment may not affect interpersonal and existential/spiritual wellbeing.

Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa

BackgroundDespite a high incidence of life-limiting disease, there is a deficit of palliative care outcome evidence in sub-Saharan Africa. Providers of end of life care call for appropriate measurement tools. The objective is to compare four approaches to self-report pain and symptom measurement among African palliative care patients completing the African Palliative Care Association African Palliative Outcome Scale (APCA African POS).MethodsPatients were recruited from five services (4 in South Africa and 1 in Uganda). Research nurses cross-sectionally administered POS pain and symptom items in local languages. Both questions were scored from 0 to 5 using 4 methods: verbal rating, demonstrating the score using the hand (H), selecting a face on a visual scale (F), and indicating a point on the Jerrycan visual scale (J). H, F and J scores were correlated with verbal scores as reference using Spearman’s rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed.Results315 patients participated (mean age 43.5 years, 69.8% female), 71.1% were HIV positive and 35.6% had cancer, 49.2% lived in rural areas. Spearman’s rank correlations for pain scores were: H: 0.879, F: 0.823, J: 0.728 (all p < 0.001); for symptoms H: 0.876, F: 0.808, J: 0.721 (all p < 0.001). Weighted Kappa for pain was H: 0.798, F: 0.719 J: 0.548 and for symptoms: H: 0.818, F: 0.718, J: 0.571. There was lower agreement between verbal and both hand and face scoring methods in the Ugandan sample. Compared to the verbal scale the accuracy of predicting high pain/symptoms was H > F > J (0.96–0.89) in ROC analysis.ConclusionsHands and faces scoring methods correlate highly with verbal scoring. The Jerrycan method had only moderate weighted Kappa. POS scores can be reliably measured using hand or face score.

Maintaining wellbeing for South Africans receiving ART: The burden of pain and symptoms is greater with longer ART exposure

BACKGROUND Physical and psychological symptom burden among people with HIV infection is associated with poor quality of life, poorer treatment adherence, viral rebound and risk behaviour. Symptomatology has not been investigated among outpatients in sub-Saharan Africa. OBJECTIVE To measure the seven-day period prevalence, burden and correlates of pain and other physical and psychological symptoms among HIV patients receiving antiretroviral therapy (ART). METHODS This was a cross-sectional self-report study. A total of 378 patients were interviewed using validated tools in three South African public sector clinics. RESULTS The most prevalent symptoms were feeling sad (64%), feeling irritable (61.6%), worry (60.8%), numbness and tingling in hands/ feet (59.8%), and sexual problems (51%). In multivariate analysis, later disease stage was associated with worse psychological symptom burden (beta = 0.359; 95% confidence interval (CI) 0.202 - 0.516; p < or = 0.001), global symptom burden (beta = 0.365; 95% CI 0.204 - 0.526; p < 0.001) and number of symptoms (beta = 0.308; 95% CI 0.150 - 0.465; p < 0.001). Those receiving treatment for a greater number of years also reported higher burden for physical (beta = 0.083; 95% CI 0.037 - 0.129; p < or = 0.001), psychological (beta = 0.068; 95% CI 0.019 - 0.117; p = 0.007) and global symptoms (beta = 0.065; 95% CI 0.016 - 0.115; p = 0.010), and a greater number of symptoms (beta = 0.081; 95% CI 0.032 - 0.130; p = 0.001). CONCLUSIONS The data reveal a high symptom burden despite treatment. Detailed symptom assessment and control continues to be required in the era of treatment.