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

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

Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies

<p>Abstract</p> <p>Background</p> <p>Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the impact of three community based palliative care interventions in sub-Saharan Africa.</p> <p>Methods</p> <p>Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: <b><it>interviews </it></b>with key informants, <b><it>observations </it></b>of clinical encounters and the local health and social care context, and routine data from local <b><it>reports and statistics</it></b>.</p> <p>Results</p> <p>We interviewed 33 patients with advanced illness, 27 family carers, 36 staff, 25 volunteers, and 29 community leaders and observed clinical care of 12 patients. In each site, oral morphine was being used effectively. Patients valued being treated with dignity and respect. Being supported at home reduced physical, emotional and financial burden of travel to, and care at health facilities. Practical support and instruction in feeding and bathing patients facilitated good deaths at home.</p> <p>In each country mobile phones enabled rapid access to clinical and social support networks. Staff and volunteers generally reported that caring for the dying in the face of poverty was stressful, but also rewarding, with resilience fostered by having effective analgesia, and community support networks.</p> <p>Conclusions</p> <p>Programmes were reported to be successful because they integrated symptom control with practical and emotional care, education, and spiritual care. Holistic palliative care can be delivered effectively in the face of poverty, but a public health approach is needed to ensure equitable provision.</p

Support for UNRWA's survival

The United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA) provides life-saving humanitarian aid for 5·4 million Palestine refugees now entering their eighth decade of statelessness and conflict. About a third of Palestine refugees still live in 58 recognised camps. UNRWA operates 702 schools and 144 health centres, some of which are affected by the ongoing humanitarian disasters in Syria and the Gaza Strip. It has dramatically reduced the prevalence of infectious diseases, mortality, and illiteracy. Its social services include rebuilding infrastructure and homes that have been destroyed by conflict and providing cash assistance and micro-finance loans for Palestinians whose rights are curtailed and who are denied the right of return to their homeland

Redefining palliative care-a new consensus-based definition

Context: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective: The main objective of this article is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span