Carvalhosa A M, Henrard S, Lambert C, Hermans C
Haemostasis and Thrombosis Unit, Division of Haematology, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
Haemophilia. 2014 Jul;20(4):479-85. doi: 10.1111/hae.12341. Epub 2013 Dec 20.
In Belgium, where haemophilia affects approximately 1:7000 people (2011), data on patients' quality of life (QoL) is scarce. This project aims to assess physical and mental QoL (P-QoL and M-QoL) simultaneously, and to analyse the influence of different variables on these two aspects of QoL. After Ethics Committee approval, we contacted 84 adult haemophilia A (HA) and haemophilia B (HB) patients, without current inhibitors, on replacement therapy (on-demand or secondary prophylaxis), regularly followed up at our comprehensive treatment centre. Seventy-one (n = 59 HA, n = 12 HB) replied to our questionnaire, which included the SF36v2 QoL assessment forms. We analysed two groups of variables: one including variables previously associated with decreased QoL, and another including variables with unclear impact on QoL (e.g., patients' understanding of haemophilia-related issues, economical concerns). In our population (mean ± SD age: 45.2 ± 14.7 years old), P-QoL appeared more reduced than M-QoL. P-QoL was strongly influenced by the number of arthropathies while M-QoL was primarily affected by patients' concern of personal costs due to haemophilia. Among this latter group, having knowledge of insurance coverage had a positive impact on M-QoL. Scores did not depend on haemophilia type. QoL was impaired in our haemophilia patients. A simultaneous assessment of P-QoL and M-QoL confirmed the benefit of primary prophylaxis in P-QoL, while originally pointing out the major burden of patients' concerns and poor understanding of haemophilia-related economical issues on their M-QoL. This might become a particularly challenging issue in times of financial crisis.
在比利时，血友病影响约1:7000的人口（2011年数据），关于患者生活质量（QoL）的数据匮乏。本项目旨在同时评估生理和心理生活质量（P-QoL和M-QoL），并分析不同变量对这两个生活质量方面的影响。经伦理委员会批准后，我们联系了84名成年甲型血友病（HA）和乙型血友病（HB）患者，这些患者目前未产生抑制物，正在接受替代治疗（按需治疗或二级预防），并在我们的综合治疗中心定期接受随访。71名患者（n = 59名HA，n = 12名HB）回复了我们的问卷，问卷包括SF36v2生活质量评估表。我们分析了两组变量：一组包括先前与生活质量下降相关的变量，另一组包括对生活质量影响不明确的变量（例如，患者对血友病相关问题的理解、经济担忧）。在我们的研究人群中（平均±标准差年龄：45.2±14.7岁），P-QoL似乎比M-QoL下降得更明显。P-QoL受关节病数量的强烈影响，而M-QoL主要受患者对血友病个人费用担忧的影响。在后者这一组中，了解保险覆盖情况对M-QoL有积极影响。得分不取决于血友病类型。我们的血友病患者生活质量受损。同时评估P-QoL和M-QoL证实了初级预防对P-QoL的益处，同时最初指出了患者担忧以及对血友病相关经济问题理解不足对其M-QoL的重大负担。在金融危机时期，这可能会成为一个特别具有挑战性的问题。
