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希腊北部血友病患者人群生活质量的回顾性观察研究

A Retrospective Observational Study of Quality of Life in a Northern Greece Population of People with Haemophilia.

作者信息

Moka Eleni, Ntova Zacharo, Gavriilaki Eleni, Kotsiou Nikolaos, Chissan Sofia, Papadopoulou Theodosia, Vakalopoulou Sofia

机构信息

2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece.

出版信息

Life (Basel). 2024 May 29;14(6):697. doi: 10.3390/life14060697.

Abstract

Haemophilia presents a significant challenge to the quality of life of affected individuals. Evaluating the health-related quality of life (HRQoL) of people with haemophilia (PwH) provides a valuable mean of assessing their perception of overall care outcomes, while also identifying influential factors across various age and condition severity demographics. This observational retrospective study determined the HRQoL of 100 adult PwH in Northern Greece through comprehensive analysis and interpretation of their HRQoL levels, particularly in domains concerning their physical, emotional, and mental well-being, obtained through the Haem-A-QoL index questionnaire. Disease severity and young age were significantly associated with the administration of prophylactic treatment (84.2% of patients with severe haemophilia and 65.2% of patients aged 18-30). The mean Haem-A-QoL score was 40.11 ± 17.38, with the lowest HRQoL observed in the 46-60 age group (46.16), and the highest in the ≥61 age groups (35.16). Notably, the 'Sports/Leisure' and 'Physical Health' domains exhibited the highest scores, in contrast to 'Family Planning' and 'Relationships/Sexuality'. Individuals with mild haemophilia recorded the lowest mean score (39.38), while those with a severe condition exhibited the highest (41.23). Age, disease severity, and physical activity emerged as primary determinants significantly affecting HRQoL outcomes.

摘要

血友病对患者的生活质量构成了重大挑战。评估血友病患者(PwH)与健康相关的生活质量(HRQoL),为评估他们对整体护理结果的认知提供了一种有价值的手段,同时还能确定不同年龄和疾病严重程度人群中的影响因素。这项观察性回顾性研究通过对100名希腊北部成年血友病患者的HRQoL水平进行全面分析和解读,确定了他们的HRQoL,特别是通过Haem-A-QoL指数问卷获得的有关其身体、情感和心理健康的领域。疾病严重程度和年轻与预防性治疗的实施显著相关(84.2%的重度血友病患者和65.2%的18 - 30岁患者)。Haem-A-QoL平均得分为40.11±17.38,46 - 60岁年龄组的HRQoL最低(46.16),≥61岁年龄组最高(35.16)。值得注意的是,“体育/休闲”和“身体健康”领域得分最高,而“计划生育”和“人际关系/性”领域得分则相反。轻度血友病患者的平均得分最低(39.38),而重度患者得分最高(41.23)。年龄、疾病严重程度和身体活动是显著影响HRQoL结果的主要决定因素。

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Hemophilia and sexual health: results from the HERO and B-HERO-S studies.血友病与性健康:HERO和B-HERO-S研究结果
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