Kotsiou Nikolaos, Evangelidis Paschalis, Bolios Michail, Tragiannidis Konstantinos, Kalmoukos Panagiotis, Ntova Zacharo, Chissan Sofia, Vakalopoulou Sofia, Gavriilaki Eleni
2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece.
Pharmacy (Basel). 2025 Feb 2;13(1):16. doi: 10.3390/pharmacy13010016.
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.
本研究评估了希腊北部血友病中心目前正在接受预防性治疗的甲型血友病患者的健康相关生活质量（HRQoL）。我们使用Haem - A - QoL问卷，对29名成年男性患者队列中的各种HRQoL维度进行了评估，分析了年龄、疾病严重程度和治疗方案的影响。结果显示，与年龄较大的组（31 - 45岁组总分为37.81，45岁以上组为43.71）相比，年轻患者（18 - 30岁）的总体HRQoL得分显著更高（总分25.36），尤其是在身体健康（分别为29.16、48.43和58.57）和心理健康领域（分别为25、37.11和41.07）。有趣的是，中度血友病患者报告的HRQoL（42.31）低于重度患者（34.85），这表明在管理他们的病情方面存在独特挑战。“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存在显著限制。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）观察到了较好的结果，与类似研究相比，我们的队列在这些方面得分非常低，表明在这些领域的生活质量明显更好。这些发现强调了个性化心理社会支持和针对性干预的重要性，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方法以改善患者在生活各个维度的结果的必要性。
