Cultural adaptation and validation of the Kidney Disease and Quality of Life-Short Form (KDQOL-SF™) version 1.3 questionnaire in Uganda

Background: Chronic kidney disease is on the rise in sub-Saharan African countries such as Uganda, and patients often present with advanced disease requiring kidney replacement therapies. Health-related quality of life is a key outcome in chronic kidney disease management but, in Uganda, no tools have been validated to measure this. The aim of this study was to culturally adapt and validate the Kidney Disease Quality of Life-Short Form version 1.3 (KDQOL-SF™) questionnaire for use in the Ugandan setting. Methods: We conducted a four-phase, mixed-methods study which included translation, cultural adaptation, optimisation of face validity and field testing. Our participants included healthcare workers, and patients aged 18 years with an estimated glomerular filtration rate <15 mL/min/1.73 m2. Results: The tool was culturally adapted and translated into one of the Ugandan languages, Luganda, which, with an English version of the tool, was validated and field tested. Over 80% of the subdomains had less than  10% floor and ceiling effects. For reliability, Cronbach’s α coefficient scores ranged from 0.96 to 0.41, with 10 out of 18 subdomains scoring >0.70, indicating acceptable internal consistency. The tool demonstrated  discriminant validity, with patients with comorbidities reporting lower quality of life scores, as postulated. Conclusions: The Luganda and English versions of the KDQOL-SF questionnaire have sufficient face and content validity, reliability and acceptability to assess the quality of life of patients with kidney failure in Uganda

PEPFAR Public Health Evaluation -Care and Support -Phase I Uganda

Phase 1, a survey of 120 care facilities in Kenya and Uganda, found that over 90% of facilities provided some level of clinical, psychological,and preventive care. Pain control was very limited with paracetamol often the only analgesic. In focus group discussions, patients appreciated free care and positive attitudes from staff, but said that services would be improved by more staff, shorter queues, and reliable drug supplies

Palliative care within universal health coverage: the Malawi Patient-and-Carer Cancer Cost Survey

Objective Evidence of the role of palliative care to reduce financial hardship and to support wellbeing in low- and middle-income countries (LMIC) is growing, though standardised tools to capture relevant economic data are limited. We describe the development of the Patient-and-Carer Cancer Cost Survey (PaCCCt survey) which can be used to gather data on health care use and out-of-pocket expenditure (OOPE) in households affected by cancer in LMIC. Methods To identify relevant content qualitative data were gathered using Photovoice to detail concepts of wellbeing and cost areas of importance in households receiving palliative care in Blantyre, Malawi. Existing approaches and tools used to capture OOPE were mapped through a review of the literature. The WHO TB patient cost survey was chosen for adaptation. Face and content validity of a zero-draft of the PaCCCt survey were developed through review by health care professionals and a national stakeholder group. The final survey was translated into local language (Chichewa) and piloted. Results The PaCCCt survey is a tablet-based, third-party administered survey recording health care service utilisation and related direct and indirect costs. Coping strategies (loans and dissaving etc.), funeral costs and wellbeing at household level are included. Completion time is less than 30 minutes. Conclusion The PaCCCt survey can be used as part of economic evaluations in populations in need of palliative care in LMIC. Such evidence can support calls for the inclusion of palliative care within Universal Health Coverage which requires end-user protection from financial hardship

Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures

BACKGROUND: Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. METHODS: Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. RESULTS: Among 461 participants across all countries, subscale "social and family wellbeing" had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G+Pal with POS (0.66). CONCLUSIONS: The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis

Barriers and facilitators to women’s leadership in savings associations in Uganda

The Village Savings and Loan Association (VSLA) model is currently being employed in Uganda for deepening financial inclusion and poverty reduction. Despite its focus on women’s empowerment, concerns have arisen of an under-representation of women on VSLA leadership committees. Human rights-based, economic, and social justice arguments support active participation of women on VSLA leadership committees. The study sought to identify, explicate and characterise the barriers and facilitators to women in VSLA leadership. An exploratory study design using qualitative methods was selected to address the research objectives. Forty-nine focus group discussions were undertaken, featuring both VSLA members and non-members. VSLAs for inclusion in the study were randomly selected from within four regions of Uganda, stratified by: mature (>2 years old) versus new (<2 years old). The study exposed a diverse array of barriers and facilitators to women in VSLA leadership positions, revealing the influence of individual, material, institutional and social factors, in addition to social norms and gender characteristics, on women in VSLA leadership. The findings revealed that the design of interventions to achieve fair representation of women in leadership positions should be informed by an understanding of the different types, relative strengths, support for/against, and intersectionality of the factors impacting women in VSLA leadership

Change in multidimensional problems and quality of life over three months after HIV diagnosis: a multicentre longitudinal study in Kenya and Uganda.

BACKGROUND: Evidence on patient-reported outcomes of newly diagnosed HIV patients is scarce, and largely cross-sectional. This prospective cohort study describes the prevalence of, and changes in, patient-reported outcomes in the three months after HIV diagnosis, in 11 HIV outpatient centres in Kenya and Uganda. METHODS: Adults were recruited within 14 days of result, completing self-report measures four times at monthly intervals. Multilevel mixed-effects linear regression (quality of life continuous outcomes) and ordinal logistic regression (symptoms and concerns categorical outcomes) modelled change over time, with repeated observations grouped within individuals adjusted for demographic/clinical characteristics, and multiple imputation for missing data. RESULTS: 438 adults were enrolled and 234 (53·4%) initiated ART. Improvement was found for MOS-HIV physical health (from 46·3 [95% CI 45·1-47·3], to 53·7 [95% CI 52.8-54·6], p < 0.001), and mental health (from 46·4 [95% CI 45·5-47·3] to 54·5 [95% CI 53·7-55·4], p < 0.001). POS subscale 'interpersonal problems' improved but remained burdensome (OR = 0·91, 95% CI = 0·87-0·94, p < 0.001; 22·7% reported severe problems at final time point). The scores for the existential POS subscale (OR = 0·95, 95% CI = 0.90-1·00, p = 0.056) and physical/psychological problems POS subscale (OR = 0·97, 95% CI = 0.92-1·02, p = 0.259) did not improve. Participants who initiated ART had worsening physical/psychological (OR = 0·64, 95% CI = 0·41-0·99, p = 0·045) and interpersonal problems (OR = 0·64, 95% CI = 0·42-0·96, p = 0·033). CONCLUSION: Although some self-reported outcomes improve over time, burden of interpersonal problems remains substantial and existential concerns do not improve

APCA Atlas of Palliative Care in Africa

BACKGROUND Since Wright & Clark’s book on palliative care in Africa in 2006, there has not been a comprehensive overview describing the state of palliative care development in African countries. AIMS To describe the current state of palliative care (PC) development in Africa according to the WHO’s Public Health Strategy for integrating PC: policies, availability and access to medicines, education, and service provision. METHODS Qualitative interviews were conducted with 16 Country Experts (March-August 2016). From those interviews, 367 indicators were derived, 130 after exclusion criteria and content analysis were performed. The Country Experts rated the indicators for validity & feasibility, a 14-member international committee of experts participated in a two-round modified UCLA-RAND Delphi consensus, and the co-authors (November-December 2016) ranked the indicators. The final 19 indicators were further defined and sent to 66 Key Country Informants from 51 African countries (January-March 2017). RESULTS Surveys were received from 89% (48/54) of African countries. Uganda, South Africa, and Kenya have the highest number of specialised hospice and PC services (71% of identified PC services); 19% (9/48) have no identified hospice and PC services. 22% (12/48) indicated having stand-alone PC policies, and 42% (20/48) reported having a dedicated person for PC in the Ministry. Zambia, Uganda, South Africa, Kenya, Ghana, and Egypt reported some official form of physician accreditation. Opioid consumption per capita was low (75% countries had <1 mg consumption/capita/year) compared to the global average (43mg/capita/year), with highest consumption in Mauritius, South Africa, Namibia, and Morocco. 54% (26/48) reported having a national PC association. CONCLUSIONS This study shows that there is limited PC development in Africa, but there is also a significant improvement in the number of countries with hospice and PC services, compared to previous reports. Improvements in advocacy were identified, with more than half of countries reporting a national PC association. Governments need to take the steps to improve education, increase the number of services, and ensure safe access to opioids

An analysis of palliative care development in Africa: a ranking based on region-specific macro-indicators

CONTEXT: To date, there is no study comparing palliative care (PC) development among African countries. OBJECTIVE: To analyze comparatively PC development in African countries based on region-specific indicators. METHODS: Data were obtained from the APCA Atlas of PC in Africa and a comparative analysis conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the WHO public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52/54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. RESULTS: Surveys were received from 89% (48/54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia. CONCLUSION: Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development