Department of Hematology, King Abdulaziz University, Jeddah, Saudi Arabia.
Department of Medicine, Duke University Medical Center, Durham, United States of America.
East Mediterr Health J. 2019 Dec 29;25(12):887-895. doi: 10.26719/2019.25.12.887.
Research focusing on health-related quality of life (HRQoL) in thalassaemia patients remains limited in Saudi Arabia.
To report on HRQoL outcomes in thalassaemia patients, and study associations with psychosocial and clinical factors.
Thalassaemia patients attending King Abdulaziz University Hospital were sequentially approached for enrolment. HRQoL outcomes were assessed using a validated Arabic version of the Medical Outcomes Study Short form (SF-36).
This study included 105 individuals with β-thalassaemia major, with a mean age of 22.9 (± 11.7) (range 5-35) years, and 52.4% were male. Participants aged ≥ 14 years had a mean physical HRQoL score of 43.7 (± 10.1) and mental HRQoL score of 46.6 (± 10.5). Participants aged < 14 years, had corresponding scores of 48.4 (± 10.7) and 52.9 (± 8.0), respectively. Physical functioning scores were significantly worse for older patients, and those reporting chronic pain. Lower scores of vitality were associated with older age, chronic pain and history of splenectomy. Older age and history of splenectomy were associated with lower scores of mental health. Controlling for other variables, younger age and higher pretransfusion haemoglobin were associated with better mental HRQoL. Professional workers had better physical HRQoL scores compared to nonprofessional workers..
Controlling for other variables, higher pretransfusion haemoglobin and younger age were associated with better mental HRQoL outcomes in thalassaemia patients. Professionals reported better physical HRQoL outcomes, compared to non-professionals. Preventive and comprehensive care models are needed in Saudi Arabia to improve HRQoL outcomes in thalassaemia patients.
针对沙特阿拉伯地中海贫血症患者健康相关生活质量（HRQoL）的研究仍然有限。
报告地中海贫血症患者的 HRQoL 结果，并研究与心理社会和临床因素的关联。
连续向在阿卜杜勒阿齐兹国王大学医院就诊的地中海贫血症患者提出入组请求。使用经过验证的阿拉伯语版医疗结局研究短表（SF-36）评估 HRQoL 结果。
本研究纳入了 105 名β-地中海贫血重型患者，平均年龄为 22.9（±11.7）（范围 5-35）岁，其中 52.4%为男性。年龄≥14 岁的参与者的平均生理 HRQoL 评分为 43.7（±10.1），心理 HRQoL 评分为 46.6（±10.5）。年龄<14 岁的参与者的相应评分分别为 48.4（±10.7）和 52.9（±8.0）。生理功能评分在年龄较大的患者和有慢性疼痛的患者中较差，活力评分较低与年龄较大、慢性疼痛和脾切除术史有关。年龄较大和脾切除术史与心理健康评分较低有关。控制其他变量后，年龄较小和输血前血红蛋白较高与更好的心理 HRQoL 相关。专业工作者的生理 HRQoL 评分优于非专业工作者。
控制其他变量后，输血前血红蛋白较高和年龄较小与地中海贫血症患者的更好的心理 HRQoL 结果相关。与非专业人员相比，专业人员报告的生理 HRQoL 结果更好。沙特阿拉伯需要预防和综合护理模式，以改善地中海贫血症患者的 HRQoL 结果。
