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  • 标题:Real-world utilities and health-related quality-of-life data in hemophilia patients in France and the United Kingdom
  • 本地全文:下载
  • 作者:Liz Carroll ; Gary Benson ; Jérémy Lambert
  • 期刊名称:Patient Preference and Adherence
  • 印刷版ISSN:1177-889X
  • 电子版ISSN:1177-889X
  • 出版年度:2019
  • 卷号:13
  • 页码:941-957
  • DOI:10.2147/PPA.S202773
  • 出版社:Dove Medical Press Ltd
  • 摘要:Purpose: Congenital hemophilia A and B are bleeding disorders characterized by deficiency of factors VIII and IX, respectively. This study aimed to collect health-related quality-of-life (HRQoL) and health-utility data from hemophilia patients with differing disease severity. Methods: Individuals with hemophilia aged ≥12 years living in France or the UK completed a series of questionnaires, including the EQ-5D-3L and -5L and SF-36 version 2. Association with demographic and clinical variables was explored using linear regression, and health-utility comparison was completed using Pearson and intraclass correlation coefficients. Results: A total of 122 patients in France and 62 in the UK completed the survey. The combined sample primarily consisted of hemophilia A patients, mean age of 41 years, 70% had severe hemophilia, and 56% were on long-term prophylaxis. Similar HRQoL and utility scores were observed across the French and UK samples. The presence of more than two target joints, occurrence of joint surgery, and increased joint-pain frequency were independent predictors of lower SF-36 — physical health summary scores and lower health-utility scores. No statistically significant reductions in SF-36 — mental health summary scores were observed, except for participants with target joints. Strong correlations were observed between health- utility values derived from the three instruments ( r =0.69–0.79). Conclusion: Results of this study reinforce the importance of appropriate treatment to limit the physical burden and long-term joint damage associated with hemophilia. Further, utility values collected here reflect real-world data, and can serve as health-state weights in future cost–utility analyses.
  • 关键词:quality-of-life; health utility; hemophilia A; hemophilia B; survey
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