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.

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.

'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.

Building Capacity for Research Ethics Committees in Uganda.

Timely communication from Research Ethics Committees (REC) to researchers is essential to meet deadlines. We conducted a capacity building program for REC members, REC and research administrators, and researchers from seven RECs in Uganda in order to improve the research regulatory approval cycle. The training was delivered from March 2020 to July 2021. Trainees were evaluated using pre and post-training tests. There was an increase in the average score from 38% to 53% in pre and post-training test respectively for the personal effectiveness and leadership programme for REC and research administrators. There was an increase in the average score of from 53.9% to 70.1% in pre and post-training test respectively for training on emerging and complex study designs. We achieved shift in knowledge and skills in use of the National Research Information Management System. We recommend regular training of REC members and administrators for efficient review of research protocols.

Improved clinical and laboratory skills after team-based, malaria case management training of health care professionals in Uganda.

BACKGROUND: Deployment of highly effective artemisinin-based combination therapy for treating uncomplicated malaria calls for better targeting of malaria treatment to improve case management and minimize drug pressure for selecting resistant parasites. The Integrated Management of Malaria curriculum was developed to train multi-disciplinary teams of clinical, laboratory and health information assistants. METHODS: Evaluation of training was conducted in nine health facilities that were Uganda Malaria Surveillance Programme (UMSP) sites. From December 2006 to June 2007, 194 health professionals attended a six-day course. One-hundred and one of 118 (86%) clinicians were observed during patient encounters by expert clinicians at baseline and during three follow-up visits approximately six weeks, 12 weeks and one year after the course. Experts used a standardized tool for children less than five years of age and similar tool for patients five or more years of age. Seventeen of 30 laboratory professionals (57%) were assessed for preparation of malaria blood smears and ability to interpret smear results of 30 quality control slides. RESULTS: Percentage of patients at baseline and first follow-up, respectively, with proper history-taking was 21% and 43%, thorough physical examination 18% and 56%, correct diagnosis 51% and 98%, treatment in compliance with national policy 42% and 86%, and appropriate patient education 17% and 83%. In estimates that adjusted for individual effects and a matched sample, relative risks were 1.86 (95% CI: 1.20,2.88) for history-taking, 2.66 (95%CI: 1.60,4.41) for physical examination, 1.77 (95%CI: 1.41,2.23) for diagnosis, 1.96 (95%CI: 1.46,2.63) for treatment, and 4.47 (95%CI: 2.68,7.46) for patient education. Results were similar for subsequent follow-up and in sub-samples stratified by patient age. Quality of malaria blood smear preparation improved from 21.6% at baseline to 67.3% at first follow-up (p < 0.008); sensitivity of interpretation of quality control slides increased from 48.6% to 70.6% (p < 0.199) and specificity increased from 72.1% to 77.2% (p < 0.736). Results were similar for subsequent follow-up, with the exception of a significant increase in specificity (94.2%, p < 0.036) at one year. CONCLUSION: A multi-disciplinary team training resulted in statistically significant improvements in clinical and laboratory skills. As a joint programme, the effects cannot be distinguished from UMSP activities, but lend support to long-term, on-going capacity-building and surveillance interventions.

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.

Training needs assessment for clinicians at antiretroviral therapy clinics: evidence from a national survey in Uganda.

BACKGROUND: To increase access to antiretroviral therapy in resource-limited settings, several experts recommend "task shifting" from doctors to clinical officers, nurses and midwives. This study sought to identify task shifting that has already occurred and assess the antiretroviral therapy training needs among clinicians to whom tasks have shifted. METHODS: The Infectious Diseases Institute, in collaboration with the Ugandan Ministry of Health, surveyed health professionals and heads of antiretroviral therapy clinics at a stratified random sample of 44 health facilities accredited to provide this therapy. A sample of 265 doctors, clinical officers, nurses and midwives reported on tasks they performed, previous human immunodeficiency virus training, and self-assessment of knowledge of human immunodeficiency virus and antiretroviral therapy. Heads of the antiretroviral therapy clinics reported on clinic characteristics. RESULTS: Thirty of 33 doctors (91%), 24 of 40 clinical officers (60%), 16 of 114 nurses (14%) and 13 of 54 midwives (24%) who worked in accredited antiretroviral therapy clinics reported that they prescribed this therapy (p<0.001). Sixty-four percent of the people who prescribed antiretroviral therapy were not doctors. Among professionals who prescribed it, 76% of doctors, 62% of clinical officers, 62% of nurses and 51% of midwives were trained in initiating patients on antiretroviral therapy (p=0.457); 73%, 46%, 50% and 23%, respectively, were trained in monitoring patients on the therapy (p=0.017). Seven percent of doctors, 42% of clinical officers, 35% of nurses and 77% of midwives assessed that their overall knowledge of antiretroviral therapy was lower than good (p=0.001). CONCLUSION: Training initiatives should be an integral part of the support for task shifting and ensure that antiretroviral therapy is used correctly and that toxicity or drug resistance do not reverse accomplishments to date.

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.

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 "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.

Advances in clinical education: a model for infectious disease training for mid-level practitioners in Uganda.

Advances in health professional education have been slow to materialize in many developing countries over the past half-century, contributing to a widening gap in quality of care compared to developed countries. Recent calls for reform in global health professional education have stressed, among other priorities, the need for approaches that strengthen clinical reasoning skills. While the development of these skills is critical to enhance health systems, little research has been carried out on the effectiveness of applying these strategies in the context of severe human resource shortages and complex disease presentations. Integrated Infectious Disease Capacity Building Evaluation (IDCAP) based at the Infectious Diseases Institute at Makerere University created a training program using current best practices in clinical education to support the development of complex reasoning skills among clinicians in rural Uganda. Over a period of 9 months, the program integrated classroom and clinic-based training approaches and measured indicators of success with particular reference to common infectious diseases. This article describes in detail the IDCAP approach to integrating advances in health professional education theory in the context of an overburdened, inadequately resourced primary health care system; results from the evaluation are expected in 2012.

The prevalence and burden of symptoms amongst cancer patients attending palliative care in two African countries.

BACKGROUND: The majority of cancer presentations in Africa are advanced and incurable, with incidence of malignancies projected to increase significantly. Despite the African cancer burden, almost nothing is known about the symptomatology of malignant progressive disease. This study aimed to determine the symptom prevalence and burden amongst advanced cancer patients in two African countries. METHODS: The Memorial Symptom Assessment Schedule Short Form (MSAS-SF) was used to measure the 7-d period prevalence and associated burden of multidimensional symptoms amongst adult patients attending palliative care in South Africa and Uganda. Further demographic and clinical variables were collected. RESULTS: Of the 112 patients recruited, 22 (19.6%) had an underlying HIV diagnosis. The most common cancer primaries were breast (N=24), cervix (N=21) and lung (N=14). The mean number of symptoms was 18 (SD=6.6). The five most prevalent symptoms were pain (87.5%), lack of energy (77.7%), feeling sad (75.9%), feeling drowsy (72.3%) and worrying (69.6%). The five symptoms ranked as most severe were as follows: pain n=26 (23.2%), sexual problems n=24 (21.4%), weight loss n=21 (18.8%), 'I don't look like myself'n=21 (18.8%) and lack of energy n=20 (17.9%). DISCUSSION: Pain and psychological problems were four of the five most common symptoms, found in more than 3 out of 4 patients. Our sample's reported mean number of symptoms was far higher than reported in other global studies. These data can inform the delivery of appropriate clinical care. The prevalence of multidimensional symptoms underlines the importance of holistic approaches to patient assessment and management, taking account of multiple and potentially interacting symptoms and locally appropriate intervention.

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.

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.

Improved malaria case management after integrated team-based training of health care workers in Uganda.

Malaria case management in Africa is characterized by presumptive treatment and substantial overtreatment. We evaluated an integrated team-based training program on malaria case management. Surveillance data 120 days before and after training were compared at eight health facilities in Uganda. After training, the proportion of patients with suspected malaria referred for blood smears increased from 38.3% to 54.6% (P=0.04) in persons<5 years of age years and from 34.1% to 53.4% (P=0.02) in those>or=5 years of age. The proportion of patients with negative blood smears prescribed antimalarial drugs decreased from 47.9% to 19.6% (P<0.001) in persons<5 years of age and from 38.8% to 15.6% (P<0.001) in those>or=5 years of age. Training did not improve the proportion of patients with positive blood smears prescribed antimalarial drugs, the proportion of patients prescribed appropriate antimalarial drugs, or the diagnostic accuracy of microscopy. Integrated team-based training may improve malaria case management and reduce the number of unnecessary antimalarial treatments.