Health-Related Quality of Life (HRQoL) in Haemodialysis Patients in Khartoum, Sudan

Samira Khatir Ali Fadlalla
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Abstract

Much research has been conducted in many countries on the Health-Related Quality of Life (HRQoL) of haemodialysis patients, but few have been conducted in Khartoum, Sudan. All studies have shown that patients’ Quality of Life regarding the dimensions of physical, psychological, social, and environmental was affected by the disease. Previous research ignored the impact of religious beliefs on haemodialysis patients. We used the WHOQOL-BREF questionnaire (the English standard version) to collect data from 181 participating patients. Religious beliefs had a significant impact on the overall outcome of the study, and strong social relationships among the Sudanese population (which distinguishes the Sudanese population from other nations) increased the patients’ satisfaction rate with their social relationships. The lack of transport facilities from the patients’ homes to the dialysis center (and vice versa) forced the patients to reduce the number of prescribed sessions. Background: In recent decades, Health-Related Quality of Life (HRQoL) endpoints have proven to be valuable research tools for evaluating the outcomes of therapeutic interventions in chronic diseases. End-stage renal disease (ESRD) is one such chronic disease that leads to a high degree of disability in various aspects of the patient’s life and impairs their quality of life. Objectives: The main objectives of this study were to assess the QoL in haemodialysis patients concerning their physical, psychological, social, and environmental health dimensions, and to assess the effects of age, sex, income, and level of education, in addition, to identify modifiable factors in Khartoum Sudan, associated with Health-Related Quality of Life (HRQoL) among chronic haemodialysis patients. Instrument and Material: A sample of 181 patients was recruited for this study. To collect the data we used the WHOQOL-BREF (the English standard version), a generic health-related questionnaire developed by the WHOQOL group and available in 19 different languagesThe English standard version was recommended by Mrs Sibel Volcan (WHOQOL representative) because it is best suited to Sudan. Scoring and Validation of WHOQOL-BREF Questionnaire: A detailed step-by-step guide to using the WHOQOL-BREF questionnaire was clearly explained to me in a separate document by the WHOQOL representative. Results: Religious beliefs have a significant impact on the overall outcome of the study. No correlation was found between patients’ age, gender, and quality of life. Physical pain prevented 63.5% of the participating patients from doing what they needed to do, 49.2% of the haemodialysis patients had the energy to carry out their daily activities, 71.8 were satisfied with their sleep, 34.3% often had a negative feeling, 83% were satisfied with their sex life, 2.8% do not have a physically healthy environment, 43.3% were dissatisfied with the condition of their living spaces, the transportation was a nightmare for the majority of patients, 84.5% were satisfied with their social relationships and the support they receive from people around them, and .6% of patients have no way at all to meet their daily needs. Discussion: Physical pain prevented 63.5% of patients from doing what they needed to do to some extent, 40.9% were dependent on medical treatments to perform their daily activities, more than half of haemodialysis patients can get around, the lack of important information harms patients and transportation is a nightmare for the majority of participating haemodialysis patients. Conclusion: Inadequate distribution of dialysis centers in Sudan, lack of stable transportation from patients’ homes to dialysis centers (and vice versa), and insufficient information on how to deal with the disease were significantly associated with lower scores for all general and several kidney disease-related HRQoL scores. Key words: HRQOL, Haemodialysis, Sudan
苏丹喀土穆血液透析患者与健康相关的生活质量 (HRQoL)
许多国家对血液透析患者与健康相关的生活质量(HRQoL)进行了大量研究,但在苏丹喀土穆进行的研究很少。所有研究都表明,患者在身体、心理、社会和环境等方面的生活质量都受到了疾病的影响。以往的研究忽略了宗教信仰对血液透析患者的影响。我们使用 WHOQOL-BREF 问卷(英文标准版)收集了 181 名参与患者的数据。宗教信仰对研究的总体结果有重大影响,苏丹人之间牢固的社会关系(这是苏丹人区别于其他民族的地方)提高了患者对社会关系的满意度。由于缺乏从患者家中到透析中心(反之亦然)的交通设施,患者不得不减少规定的透析次数。背景:近几十年来,与健康相关的生活质量(HRQoL)终点已被证明是评估慢性病治疗干预效果的重要研究工具。终末期肾病(ESRD)就是这样一种慢性疾病,它导致患者在生活的各个方面高度残疾,并损害他们的生活质量。研究目的本研究的主要目的是评估血液透析患者在身体、心理、社会和环境健康方面的生活质量,并评估年龄、性别、收入和教育水平的影响,此外还确定苏丹喀土穆与慢性血液透析患者健康相关生活质量(HRQoL)有关的可调节因素。工具和材料:本研究招募了 181 名患者作为样本。为了收集数据,我们使用了 WHOQOL-BREF(英语标准版),这是一份由 WHOQOL 小组开发的通用健康相关问卷,有 19 种不同语言的版本。WHOQOL-BREF 问卷的评分和验证:WHOQOL 代表在一份单独的文件中向我清楚地解释了使用 WHOQOL-BREF 问卷的详细步骤指南。结果:宗教信仰对研究的总体结果有重大影响。在患者的年龄、性别和生活质量之间没有发现相关性。63.5%的参与研究的患者因身体疼痛而无法做自己需要做的事情,49.2%的血液透析患者有精力进行日常活动,71.8%的患者对自己的睡眠感到满意,34.3%的患者经常有负面情绪,83%的患者对自己的性生活感到满意,2.8%的患者没有一个身体健康的环境,43.3%的患者对生活空间的条件不满意,交通对大多数患者来说是个噩梦,84.5%的患者对自己的社会关系和周围人给予的支持感到满意,0.6%的患者根本无法满足自己的日常需求。讨论63.5%的患者因身体疼痛而在一定程度上无法做他们需要做的事情,40.9%的患者依靠药物治疗来进行日常活动,超过半数的血液透析患者可以四处走动,缺乏重要信息对患者造成伤害,交通是大多数参与血液透析患者的噩梦。结论苏丹透析中心分布不均、从患者家中到透析中心(反之亦然)缺乏稳定的交通方式以及有关如何应对疾病的信息不足与所有一般评分和几项与肾脏疾病相关的 HRQoL 评分较低有显著关系。关键词HRQOL 血液透析 苏丹
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