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

BACKGROUND: Despite 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). METHODS: Patients 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. RESULTS: 315 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. CONCLUSIONS: Hands 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.

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

BACKGROUND: Patients 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. METHODS: The 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. CONCLUSIONS: Findings 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.

Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study.

BACKGROUND: Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. METHODS: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. RESULTS: 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA. CONCLUSIONS: Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research.

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

BACKGROUND: Despite 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. METHODS: Validation 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 (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's 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). RESULTS: The 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 Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's 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. CONCLUSIONS: The 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.

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.

The "Spirit 8" successfully captured spiritual well-being in African palliative care: factor and Rasch analysis.

OBJECTIVE: To describe the dimensionality of a measure of spiritual well-being (SWB) (the "Spirit 8") in palliative care (PC) patients in South Africa and Uganda, and to determine SWB in this population. STUDY DESIGN AND SETTING: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI). Translated questionnaires were administered to consecutively recruited patients. Factor analysis and Rasch analysis were used to examine the dimensionality of eight items from the Well-being and Transcendent subscales. The resulting measure (the "Spirit 8") was used to determine levels of SWB. RESULTS: Two hundred eighty-five patients recruited; mean age 40.1; 197 (69.1%) female; primary diagnosis HIV (80.7%), cancer (17.9%). Internal consistency of the eight-item scale was α=0.73; Well-being factor α=0.69, Transcendence factor α=0.68. Rasch analysis suggested unidimensionality. Mean SWB score was 26.01 (standard deviation 5.68). Spiritual distress was present in 21.4-57.9%. Attending the Ugandan service, HIV and younger age were associated with poorer SWB scores. CONCLUSION: The Spirit 8 is a brief, psychometrically robust, unidimensional measure of SWB for use in South African and Ugandan PC research. Further research testing the Spirit 8 and examining the SWB of PC patients in South Africa and Uganda is needed to improve spiritual care.

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.

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 tool's 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.

Multidrug-resistant and extensively drug-resistant tuberculosis: implications for the HIV epidemic and antiretroviral therapy rollout in South Africa.

Drug-resistant tuberculosis (TB) is emerging as a major clinical and public health challenge in areas of sub-Saharan Africa where there is a high prevalence of human immunodeficiency virus (HIV) infection. TB drug-resistance surveillance in this region has been limited by laboratory capacity and the public health infrastructure; however, with the maturation of the HIV epidemic, the burden of drug-resistant TB is increasing rapidly. The recent discovery of large numbers of cases of multidrug-resistant (MDR) TB and extensively drug-resistant (XDR) TB in South Africa likely represents an unrecognized and evolving epidemic rather than sporadic, localized outbreaks. The combination of a large population of HIV-infected susceptible hosts with poor TB treatment success rates, a lack of airborne infection control, limited drug-resistance testing, and an overburdened MDR-TB treatment program provides ideal conditions for an MDR-TB and XDR-TB epidemic of unparalleled magnitude. In the present article, we review the history of drug-resistant TB in South Africa, describe its interaction with the HIV epidemic and the resultant consequences, and suggest measures necessary for controlling MDR-TB and XDR-TB in this context. A successful response to the emergence of MDR-TB and XDR-TB will necessitate increased resources for and collaboration between TB and HIV programs.