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 Kenya

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

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

PEPFAR Public Health Evaluation - Care and Support - Phase 2 Uganda

Phase 2 consisted of a longitudinal cohort study to measure patient-reported outcomes of care and support, a costing survey, and qualitative interviews to understand patient and carer experiences

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

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

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

Towards person-centered quality care for children with life-limiting and life-threatening illness: self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study

Abstract Background: Paediatric life-limiting and life-threatening conditionslife-limiting conditions place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. Aim: This study aimed to identify the symptoms, concerns, and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years with life-limiting conditions were purposively sampled by age, sex, and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.Results: 120 interviews were conducted with children with life-limiting conditions (n=61 age range 7-17 years), and where self-report was not possible caregivers (n=59) of children (age range 0-17). Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included: physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g., play, school attendance); existential concerns – worry about death, and loss of ambitions,health care quality– child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation