Health-related quality of life and its associated factors among hemophilia patients: experience from Ethiopian Hemophilia Treatment Centre.

IF 1.2 Q4 PHARMACOLOGY & PHARMACY
Sitina Iyar, Girma Tekle Gebremariam, Dessale Abate Beyene, Amha Gebremedhin, Tamrat Assefa Tadesse
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引用次数: 0

Abstract

Background: Hemophilia is a rare genetic condition that is often overlooked and underdiagnosed, particularly in low-income countries. Long-term spontaneous joint bleeding and soft tissues can have a significant negative impact on a patient's health-related quality of life (HRQoL). The objective of this study was to assess HRQoL and its associated factors in Ethiopian patients with hemophilia.

Methods: A cross-sectional survey was conducted among patients with hemophilia at Tikur Anbessa Specialized Hospital (TASH) in Addis Ababa, Ethiopia. Patients were recruited consecutively during follow-up visits. The European Quality of Life Group's 5-Domain Questionnaires at five levels (EQ-5D-5L) and Euro Quality of Life Group's Visual Analog Scale (EQ-VAS) instruments were used to assess HRQoL. The EQ-5D-5L utility score was computed using the disutility coefficients. We applied the Krukal-Wallis and Mann-Whitney U tests to determine the differences in EQ-5D-5L and EQ-VAS utility scores between patient groups. A multivariate Tobit regression model was used to identify factors associated with HRQoL. Statistical analyses were performed using STATA version 14 and statistical significance was determined at p < 0.05.

Results: A total of 105 patients with hemophilia participated in the study, with a mean (standard deviation (SD) age of 21.09 (± 7.37] years. The median (IQR) EQ-5D-5L utility and EQ-VAS scores were 0.86 (0.59-0.91) and 75 (60.0-80.0), respectively. Age was significantly negatively associated with the EQ-5D-5L utility index and EQ-VAS (β = -0.020, 95 CI = -0.034, -0.007) and β = -0.974, 95% CI = -1.72, 0.225), respectively. The duration since hemophilia diagnosis (β-0.011, 95% CI, 0.001-0.023) and living out of Addis Ababa (β = -0.128, 95% CI, -0.248-, -0.007) were also significantly negatively associated with the EQ-5D-5L utility index..

Conclusion: The median EQ-5D-5L utility and EQ-VAS scores of patients with hemophilia were 0.86 (0.59-0.91) and 75 (60.0-80.0), respectively. Older age, living far from the Hemophilia Treatment Center (HTC), and longer duration since diagnosis were significantly negatively associated with HRQoL. HRQoL may be improved by providing factor concentrates, decentralizing HTCs in different parts of the country, increasing awareness of bleeding disorders among health professionals, and providing psychosocial support to affected patients.

血友病患者的健康相关生活质量及其相关因素:埃塞俄比亚血友病治疗中心的经验。
背景:血友病是一种罕见的遗传性疾病,经常被忽视和诊断不足,尤其是在低收入国家。长期自发性关节出血和软组织损伤会对患者与健康相关的生活质量(HRQoL)产生严重的负面影响。本研究旨在评估埃塞俄比亚血友病患者的 HRQoL 及其相关因素:对埃塞俄比亚亚的斯亚贝巴 Tikur Anbessa 专科医院(TASH)的血友病患者进行了横断面调查。患者是在复诊时连续招募的。评估 HRQoL 时使用了欧洲生活质量小组五级五域问卷(EQ-5D-5L)和欧洲生活质量小组视觉模拟量表(EQ-VAS)工具。EQ-5D-5L效用分值是利用效用系数计算得出的。我们采用 Krukal-Wallis 和 Mann-Whitney U 检验来确定患者组间 EQ-5D-5L 和 EQ-VAS 实用性得分的差异。多变量 Tobit 回归模型用于确定与 HRQoL 相关的因素。统计分析使用 STATA 14 版进行,统计显著性以 p 为单位:共有 105 名血友病患者参与了研究,平均年龄(标准差(SD))为 21.09 (± 7.37]岁。EQ-5D-5L 实用性和 EQ-VAS 评分的中位数(IQR)分别为 0.86(0.59-0.91)和 75(60.0-80.0)。年龄分别与 EQ-5D-5L 实用指数和 EQ-VAS 呈明显负相关(β = -0.020,95 CI = -0.034,-0.007)和 β = -0.974,95 CI = -1.72,0.225)。血友病确诊后的持续时间(β-0.011,95% CI,0.001-0.023)和居住地不在亚的斯亚贝巴(β = -0.128,95% CI,-0.248-,-0.007)也与 EQ-5D-5L 实用指数呈显著负相关:血友病患者的 EQ-5D-5L 实用性和 EQ-VAS 评分中位数分别为 0.86(0.59-0.91)和 75(60.0-80.0)。年龄较大、居住地离血友病治疗中心(HTC)较远以及确诊时间较长与 HRQoL 呈显著负相关。通过提供浓缩因子、分散全国各地的血友病治疗中心、提高医疗专业人员对出血性疾病的认识以及为患者提供心理支持,可以改善患者的 HRQoL。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
1.80
自引率
0.00%
发文量
29
审稿时长
8 weeks
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