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

Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study.

BACKGROUND: The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its "silent" nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival. METHODS: A mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients' lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients' experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months. DISCUSSION: To the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients' need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings

Capacity for the management of kidney failure in the International Society of Nephrology Africa region:Report from the 2023 ISN Global Kidney Atlas (ISN-GKHA)

The burden of chronic kidney disease (CKD) and associated risk of kidney failure are increasing in Africa. The management of people with CKD is fraught with numerous challenges because of limitations in health systems and infrastructures for care delivery. From the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA), we describe the status of kidney care in the ISN Africa region using the World Health Organization building blocks for health systems. We identified limited government health spending which in turn led to increased out-of-pocket costs for people with kidney disease at the point of service delivery. The healthcare workforce across Africa was sub-optimal and further challenged by the exodus of trained healthcare workers out of the continent. Medical products, technologies, and services for the management of people with non-dialysis CKD and for kidney replacement therapy (KRT) were scarce due to limitations in health infrastructure that was inequitably distributed. There were few kidney registries and advocacy groups championing kidney disease management in Africa compared to the rest of the world. Strategies for ensuring improved kidney care in Africa include focusing on CKD prevention and early detection, improving the effectiveness of the available healthcare workforce (e.g., multidisciplinary teams, task substitution, and telemedicine), augmenting kidney care financing, providing quality, up-to-date health information data, and improving the accessibility, affordability, and delivery of quality treatment (KRT or conservative kidney management) for all people living with kidney failure

Comparison of the health-related quality of life of end stage kidney disease patients on hemodialysis and non-hemodialysis management in Uganda.

BACKGROUND: Health-related quality of life is recognized as a key outcome in chronic disease management, including kidney disease. With no national healthcare coverage for hemodialysis, Ugandan patients struggle to pay for their care, driving families and communities into poverty. Studies in developed countries show that patients on hemodialysis may prioritize quality of life over survival time, but there is a dearth of information on this in developing countries. We therefore measured the quality of life (QOL) and associated factors in end stage renal disease (ESRD) patients in a major tertiary care hospital in Uganda. METHODS: Baseline QOL measurement in a longitudinal cohort study was undertaken using the Kidney Disease Quality of Life Short Form Ver 1.3. Patients were recruited from the adult nephrology unit if aged > 18 years with an estimated glomerular filtration rate ≤ 15mls/min/1,73m2. Clinical, demographic and micro-financial information was collected to determine factors associated with QOL scores. RESULTS: Three hundred sixty-four patients (364) were recruited, of whom 124 were on hemodialysis (HD) and 240 on non-hemodialysis (non-HD) management. Overall, 94.3% of participants scored less than 50 (maximum 100). Mean QOL scores were low across all three principal domains: physical health (HD: 33.14, non-HD: 34.23), mental health (HD: 38.01, non-HD: 38.02), and kidney disease (HD: 35.16, non-HD: 34.00). No statistically significant difference was found between the overall quality of life scores of the two management groups. Breadwinner status (p < 0.001), source of income (p0.026) and hemodialysis management type (p0.032) were the only factors significantly associated with QOL scores, and this was observed in the physical health and kidney disease principal domains only. No factors were significantly associated with scores for the mental health principal domain and/or overall QOL score. CONCLUSION: The quality of life of Ugandan patients with ESRD has been found to be lower across all three domains of the Kidney Disease Quality of Life Short Form than reported anywhere in the world, with no difference observed between the non-HD and HD management groups. Interventions targeting all domains of QOL are needed among patients with ESRD in Uganda and, potentially, in other resource limited settings

Comparison of the health-related quality of life of end stage kidney disease patients on hemodialysis and non-hemodialysis management in Uganda.

BACKGROUND: Health-related quality of life is recognized as a key outcome in chronic disease management, including kidney disease. With no national healthcare coverage for hemodialysis, Ugandan patients struggle to pay for their care, driving families and communities into poverty. Studies in developed countries show that patients on hemodialysis may prioritize quality of life over survival time, but there is a dearth of information on this in developing countries. We therefore measured the quality of life (QOL) and associated factors in end stage renal disease (ESRD) patients in a major tertiary care hospital in Uganda. METHODS: Baseline QOL measurement in a longitudinal cohort study was undertaken using the Kidney Disease Quality of Life Short Form Ver 1.3. Patients were recruited from the adult nephrology unit if aged > 18 years with an estimated glomerular filtration rate ≤ 15mls/min/1,73m2. Clinical, demographic and micro-financial information was collected to determine factors associated with QOL scores. RESULTS: Three hundred sixty-four patients (364) were recruited, of whom 124 were on hemodialysis (HD) and 240 on non-hemodialysis (non-HD) management. Overall, 94.3% of participants scored less than 50 (maximum 100). Mean QOL scores were low across all three principal domains: physical health (HD: 33.14, non-HD: 34.23), mental health (HD: 38.01, non-HD: 38.02), and kidney disease (HD: 35.16, non-HD: 34.00). No statistically significant difference was found between the overall quality of life scores of the two management groups. Breadwinner status (p < 0.001), source of income (p0.026) and hemodialysis management type (p0.032) were the only factors significantly associated with QOL scores, and this was observed in the physical health and kidney disease principal domains only. No factors were significantly associated with scores for the mental health principal domain and/or overall QOL score. CONCLUSION: The quality of life of Ugandan patients with ESRD has been found to be lower across all three domains of the Kidney Disease Quality of Life Short Form than reported anywhere in the world, with no difference observed between the non-HD and HD management groups. Interventions targeting all domains of QOL are needed among patients with ESRD in Uganda and, potentially, in other resource limited settings