苏丹卡布斯大学医院的阿曼成年重型β地中海贫血患者的健康相关生活质量。

Q2 Medicine
Oman Medical Journal Pub Date : 2024-03-31 eCollection Date: 2024-03-01 DOI:10.5001/omj.2024.62
Asma Al-Rushaidi, Sara Al-Hinai, Hana Al-Sumri
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引用次数: 0

摘要

目的:在阿曼,重型地中海贫血症(β-TM)对健康相关生活质量(HRQoL)的影响尚不清楚。由于需要定期到医院输血以及与铁超载相关的并发症,患者在身体、精神和社会方面都受到了广泛的影响。本研究旨在评估在阿曼马斯喀特一家三级医疗中心就诊的成年 β-TM 患者的 HRQoL,以确定影响阿曼患者 QoL 的因素,从而改善管理和咨询:2022年9月至11月期间,在苏丹卡布斯大学医院对β-TM成年患者(≥18岁)进行了一项横断面研究。研究采用了经过验证的阿拉伯语版 36 项自我报告短式健康调查来确定 HRQoL:共有78名β-TM患者参与研究,其中53.8%为男性,平均年龄为(26.0±0.8)岁,介于21-53岁之间。大多数患者来自 Al Batinah North 省(n = 21;26.9%)和马斯喀特省(n = 20;25.6%),未婚(n = 44;56.4%),未受过大学教育(n = 45;57.7%),失业(n = 44;56.4%)。得分最高的 HRQoL 领域是情绪问题导致的角色限制(中位数得分 = 100),而一般健康和活力得分最低(平均分分别为 60.2±15.9 和 59.1±20.5)。有几个变量与某些领域较好的 HRQoL 有关,包括已婚、受过高等教育、有工作、经常锻炼和得到家庭支持(P < 0.05)。然而,铁超载和患有≥3 β-TM相关疾病并发症与较差的一般健康评分有关(p = 0.031 和 0.038,分别为 0.031 和 0.038),而精神问题史与八个 HRQoL 领域中六个领域的较差评分有关(p < 0.05)。此外,对疾病的社会影响的负面看法,包括延迟结婚、工作场所困难和学业成绩下降,也与各方面的 HRQoL 较差有关(P < 0.05):尽管研究样本报告的 QoL 总体良好,但发现有几个因素会影响各个领域的 HRQoL。医疗服务提供者应优先考虑维持阿曼 β-TM 患者可接受的铁超载水平,以帮助避免出现与疾病相关的并发症,从而确保更好地控制其临床病情,进而改善其 HRQoL。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Health-related Quality of Life of Omani Adult Patients with β-Thalassemia Major at Sultan Qaboos University Hospital.

Objectives: The impact of beta-thalassemia major (β-TM) on health-related quality of life (HRQoL) in Oman is not yet known. Affected individuals suffer from a wide range of physical, mental, and social consequences due to the need for regular hospital visits for blood transfusions and complications related to iron overload. This study aimed to assess the HRQoL of adult patients with β-TM attending a single tertiary care center in Muscat, Oman, to identify factors influencing Omani patients' QoL for improved management and counseling.

Methods: A cross-sectional study was conducted among adult patients (≥ 18 years) with β-TM at Sultan Qaboos University Hospital between September and November 2022. A validated Arabic version of the self-reported 36-item short-form health survey was used to determine HRQoL.

Results: A total of 78 patients with β-TM were enrolled in the study; 53.8% were male and the mean age was 26.0±0.8 years, ranging from 21-53 years. Most patients were from Al Batinah North governorate (n = 21; 26.9%) and Muscat (n = 20; 25.6%), unmarried (n = 44; 56.4%), did not have university-level education (n = 45; 57.7%), and were unemployed (n = 44; 56.4%). The HRQoL domain with the highest score was role limitations due to emotional problems (median score = 100), while general health and vitality received the lowest scores (mean scores were 60.2±15.9 and 59.1±20.5, respectively). Several variables were associated with better HRQoL in certain domains, including being married, having a high level of education, being employed, exercising regularly, and receiving family support (p < 0.05). However, iron overload and having ≥ 3 β-TM-related disease complications were associated with poorer general health scores (p = 0.031 and 0.038, respectively), while a history of mental issues was associated with poorer scores in six out of eight HRQoL domains (p < 0.05). Moreover, negative perceptions regarding the social impact of the disease including delayed marriage, workplace difficulties, and reduced academic achievement were associated with poorer HRQoL in various domains (p < 0.05).

Conclusions: Although the studied sample reported generally good QoL, several factors were found to affect HRQoL in various domains. Healthcare providers should prioritize maintaining acceptable iron overload levels in Omani patients with β-TM to help avoid the development of disease-related complications, thereby ensuring better control of their clinical conditions and consequently improving their HRQoL.

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来源期刊
Oman Medical Journal
Oman Medical Journal Medicine-Medicine (all)
CiteScore
3.10
自引率
0.00%
发文量
119
审稿时长
12 weeks
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