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阿曼镰状细胞病成年患者在苏丹卡布斯大学医院的健康相关生活质量。

Health-Related Quality of Life of Omani Adult Patients with Sickle Cell Disease at the Sultan Qaboos University Hospital.

机构信息

College of Medicine and Health Sciences, Sultan Qaboos University, Muscat, Oman.

Department of Family Medicine and Public Health, Sultan Qaboos University, Muscat, Oman.

出版信息

Sultan Qaboos Univ Med J. 2024 Aug;24(3):327-337. doi: 10.18295/squmj.3.2024.019. Epub 2024 Aug 29.

DOI:10.18295/squmj.3.2024.019
PMID:39234314
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11370945/
Abstract

OBJECTIVES

This study aimed to determine the health-related quality of life (HRQoL) of adult Omani patients with sickle cell disease (SCD). The quality of life of these patients in Oman is unknown.

METHODS

This cross-sectional study was conducted at the Sultan Qaboos University Hospital, Muscat, Oman, from June to October 2022 and included patients with SCD. A validated Arabic version of the 36-Item Short-Form Health Survey (SF-36) was used to assess HRQoL in 8 domains.

RESULTS

A total of 235 patients with SCD were included in this study, the majority of whom were female (74.9%) and between 18 and 35 years of age (64.6%). The lowest HRQoL was reported for the domain of role limitations due to physical health (median score = 25.0, interquartile range [IQR] = 35.0), while the highest was seen for role limitations due to emotional problems (median score = 66.7, IQR = 100.0). Frequent SCD-related emergency department visits/hospital admissions and the adverse effect of SCD on patients' social lives had a significant negative impact on SF-36 scores for all 8 HRQoL domains ( ≤0.05). Additionally, SCD's impact on academic performance and a history of having been bullied due to SCD had a significant negative impact on SF-36 scores for 7 domains ( ≤0.05).

CONCLUSION

Omani adult patients with SCD reported relatively poor HRQoL in several domains, with various factors found to be significantly associated with this. Healthcare providers and policy makers should consider offering additional clinical, educational and financial support to these patients to enhance their HRQoL.

摘要

目的

本研究旨在评估阿曼镰状细胞病(SCD)成年患者的健康相关生活质量(HRQoL)。目前尚不清楚阿曼 SCD 患者的生活质量情况。

方法

本横断面研究于 2022 年 6 月至 10 月在阿曼首都马斯喀特的苏丹卡布斯大学医院进行,纳入了 SCD 患者。采用经过验证的阿拉伯版 36 项简短健康调查问卷(SF-36)评估 8 个领域的 HRQoL。

结果

本研究共纳入 235 例 SCD 患者,其中大多数为女性(74.9%)和 18-35 岁(64.6%)。生理职能受限领域的 HRQoL 最低(中位数评分=25.0,四分位距 [IQR]=35.0),而情绪角色受限领域的 HRQoL 最高(中位数评分=66.7,IQR=100.0)。SCD 相关的频繁急诊就诊/住院以及 SCD 对患者社会生活的不良影响对所有 8 个 HRQoL 领域的 SF-36 评分均有显著负面影响(≤0.05)。此外,SCD 对学业表现和因 SCD 而被欺凌的经历对 SF-36 评分的 7 个领域也有显著负面影响(≤0.05)。

结论

阿曼成年 SCD 患者在多个领域报告了较差的 HRQoL,多个因素与 HRQoL 显著相关。医疗保健提供者和政策制定者应考虑为这些患者提供额外的临床、教育和财政支持,以提高其 HRQoL。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fc13/11370945/42ffeb722cee/squmj2408-327-337f1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fc13/11370945/42ffeb722cee/squmj2408-327-337f1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fc13/11370945/42ffeb722cee/squmj2408-327-337f1.jpg

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