School of Medicine, Department of Internal medicine, Makerere University College of Health Sciences, P.O. Box 7072, Kampala, Uganda.
Makerere-Mulago Palliative Care Unit, Clinical Research Building, Mulago hospital site, P.O. Box 7072, Kampala, Uganda.
BMC Palliat Care. 2021 Apr 1;20(1):52. doi: 10.1186/s12904-021-00743-0.
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.
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/1,73m. Clinical, demographic and micro-financial information was collected to determine factors associated with QOL scores.
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.
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.
健康相关生活质量被认为是慢性病管理的关键结果，包括肾脏疾病。由于乌干达没有全民医疗保健覆盖血液透析，患者难以支付治疗费用，导致家庭和社区陷入贫困。在发达国家的研究表明，血液透析患者可能会优先考虑生活质量而不是生存时间，但在发展中国家，这方面的信息很少。因此，我们在乌干达的一家主要三级保健医院测量了终末期肾病（ESRD）患者的生活质量（QOL）及其相关因素。
在一项纵向队列研究中，使用肾脏病生活质量简表 1.3 进行基线 QOL 测量。如果年龄>18 岁且估计肾小球滤过率≤15mls/min/1.73m，则从成人肾病科病房招募患者。收集临床、人口统计学和微观金融信息，以确定与 QOL 评分相关的因素。
共招募了 364 名患者（364 名），其中 124 名接受血液透析（HD）治疗，240 名接受非血液透析（非 HD）治疗。总的来说，94.3%的参与者得分低于 50（最高 100）。在所有三个主要领域，生活质量评分都较低：身体健康（HD：33.14，非 HD：34.23），心理健康（HD：38.01，非 HD：38.02）和肾脏疾病（HD：35.16，非 HD：34.00）。两个管理组的总体生活质量评分之间没有统计学上的显著差异。主要收入者的地位（p<0.001）、收入来源（p0.026）和血液透析管理类型（p0.032）是唯一与 QOL 评分显著相关的因素，仅在身体健康和肾脏疾病主要领域观察到。心理健康主要领域和/或总体 QOL 评分没有任何因素与之显著相关。
乌干达 ESRD 患者的生活质量在肾脏病生活质量简表的所有三个领域都低于世界上任何地方的报告，非 HD 和 HD 管理组之间没有差异。乌干达和其他资源有限的环境中，需要针对 ESRD 患者的所有 QOL 领域进行干预。
