苏丹卡布斯大学医院阿曼成年镰状细胞病患者的健康相关生活质量

Sara Al-Hinai, Asma Al-Rashdi, Hana Al-Sumri
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摘要

目的:阿曼成年镰状细胞病(SCD)患者的生活质量尚不清楚。本研究旨在确定在一家三级中心就诊的阿曼成年镰状细胞病患者的健康相关生活质量(HRQoL)。方法:2022 年 6 月至 10 月在苏丹卡布斯大学医院对 SCD 患者进行了横断面研究。研究采用了经过验证的阿拉伯语版 36 项短式健康调查 (SF-36),以评估八个领域的 HRQoL。结果共有 235 名 SCD 患者参与了研究,其中大多数为女性(74.9%),年龄在 18-35 岁之间(64.6%)。据报告,因身体健康而受到角色限制的 HRQoL 最低(中位数分数:25.0;四分位数间距 [IQR]:35.0),而因情绪问题而受到角色限制的 HRQoL 最高(中位数分数:66.7;四分位数间距 [IQR]:100.0)。与 SCD 相关的频繁急诊就诊/入院以及 SCD 对患者社交生活的不利影响对所有八个 HRQoL 领域的 SF-36 评分均有显著的负面影响(P ≤0.05)。此外,SCD 对学习成绩的影响和因 SCD 而被欺凌的历史对 SF-36 在多个领域的得分也有显著的负面影响(P ≤0.05)。结论阿曼成年 SCD 患者在多个领域的 HRQoL 都相对较差,其中各种因素都与较差的 HRQoL 有显著关联。医疗服务提供者和政策制定者应考虑为患者提供额外的临床、教育和经济支持,以提高他们的 HRQoL。关键词:镰状细胞病镰状细胞病;与健康相关的生活质量;成人;阿曼
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Health-Related Quality of Life of Omani Adult Patients with Sickle Cell Disease at the Sultan Qaboos University Hospital
Objectives: The quality of life of Omani adults with sickle cell disease (SCD) is not yet known. This study aimed to determine the health-related quality of life (HRQoL) of adult Omani patients with SCD attending a single tertiary center. Methods: A cross-sectional study was conducted among patients with SCD from June to October 2022 at the Sultan Qaboos University Hospital. A validated Arabic version of the 36-Item Short-Form Health Survey (SF-36) was used to assess HRQoL over eight domains. Results: A total of 235 patients with SCD participated in the study, of which the majority were female (74.9%) and 18–35 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 eight HRQoL domains (p ≤0.05). In addition, the impact of SCD on academic performance and a history of having been bullied due to SCD had a significant negative impact on SF-36 scores for several domains (p ≤0.05). Conclusion: Omani adult patients with SCD reported relatively poor HRQoL in several domains, with various factors found to have significant associations with poorer HRQoL. Healthcare providers and policy-makers should consider offering additional clinical, educational, and financial support to patients to enhance their HRQoL. Keywords: Sickle Cell Disease; Health-Related Quality of Life; Adults; Oman
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