Nikolaos Kotsiou, Paschalis Evangelidis, Michail Bolios, Konstantinos Tragiannidis, Panagiotis Kalmoukos, Zacharo Ntova, Sofia Chissan, Sofia Vakalopoulou, Eleni Gavriilaki
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引用次数: 0
Abstract
This study evaluates the health-related quality of life (HRQoL) among patients with hemophilia A currently undergoing prophylactic treatment at the Hemophilia Center of Northern Greece. Using the Haem-A-QoL questionnaire, we assessed various HRQoL dimensions in a cohort of 29 adult male patients, analyzing the impact of age, disease severity, and treatment regimens. The results revealed that younger patients (18-30 years old) exhibited significantly better overall HRQoL scores (total score of 25.36) compared to older age groups (37.81 for the 31-45 group and 43.71 in the 45+ group), particularly in the physical health (29.16 vs. 48.43 vs. 58.57) and mental well-being domains (25 vs. 37.11 vs. 41.07). Interestingly, moderate hemophilia patients reported lower HRQoL (42.31) than those with severe form (34.85), suggesting unique challenges in managing their condition. The 'Sports/Free Time' domain had the highest scores (65.81), indicating significant limitations in physical activities in the everyday lives of affected individuals. However, better outcomes were observed in the mental dimension (36.09), work/study (34.88), family planning (10.68), and relationships aspects (16.67), where our cohort reported very low scores compared to similar studies, indicating a significantly better quality of life in these domains. These findings highlight the importance of personalized psychosocial support and targeted interventions to address the specific needs of hemophilia patients, particularly in enhancing physical activity opportunities and managing the psychological burden of moderate hemophilia. The study contributes valuable insights into the HRQoL of hemophilia patients and underscores the necessity for tailored approaches to improve patient outcomes across all dimensions of life.
本研究评估了目前在希腊北部血友病中心接受预防性治疗的A型血友病患者的健康相关生活质量(HRQoL)。使用haema - a - qol问卷,我们评估了29名成年男性患者的各种HRQoL维度,分析了年龄、疾病严重程度和治疗方案的影响。结果显示,年轻患者(18-30岁)的HRQoL总分(25.36分)明显优于年龄较大的患者(31-45岁组37.81分,45岁以上组43.71分),特别是在身体健康方面(29.16比48.43比58.57)和心理健康方面(25比37.11比41.07)。有趣的是,中度血友病患者报告的HRQoL(42.31)低于重度血友病患者(34.85),这表明他们在控制病情方面面临着独特的挑战。“运动/自由时间”领域得分最高(65.81),表明受影响个体在日常生活中的身体活动有显著限制。然而,在心理维度(36.09)、工作/学习(34.88)、计划生育(10.68)和人际关系方面(16.67)观察到更好的结果,与类似研究相比,我们的队列报告的得分很低,表明这些领域的生活质量明显更好。这些发现强调了个性化社会心理支持和有针对性的干预措施的重要性,以满足血友病患者的特定需求,特别是在增加身体活动机会和管理中度血友病的心理负担方面。该研究为血友病患者的HRQoL提供了有价值的见解,并强调了采用量身定制的方法来改善患者生活各个方面的结果的必要性。