Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Canadian Hemophilia Society, Montreal, QC, Canada.
J Thromb Haemost. 2022 Feb;20(2):296-306. doi: 10.1111/jth.15570. Epub 2021 Nov 8.
Guidelines of the World Federation of Hemophilia support the provision of equitable, optimal care for people with hemophilia (PWH). However, limited research exists examining the lived experiences of PWH or the barriers to care they may encounter. The primary objective of this exploratory study was to describe the experiences of men with hemophilia in Canada.
We conducted a qualitative descriptive study using a semistructured interview guide and analyzed transcribed interviews using inductive thematic content analysis. Inclusion criteria were: age ≥18 years, English-speaking, and confirmed diagnosis of inherited hemophilia A or B.
A total of 11 participants were interviewed. Median age was 39 years old (29-73 years old), and diagnoses included severe hemophilia A (n = 5), mild hemophilia A (n = 2), and severe hemophilia B (n = 4). Three primary themes arose: (1) impact on identity and daily life; (2) dynamic changes in treatment; and (3) barriers to care and identified needs. Major subthemes included chronic pain and activity limitation, psychosocial burden, and symptom normalization. Multidisciplinary care, coordinated surgical care, improved emergency care, and clear care plans were identified as ongoing needs.
Men with hemophilia described significant symptom burden and areas of ongoing need. Collaborative efforts between hematologists, emergency room physicians, and surgeons to establish hospital-specific testing, treatment and referral guidelines, and regular hemophilia treatment center audits may help address these care gaps, providing more person-centered, equitable care. Future work is required to implement these strategies and monitor their effects.
世界血友病联盟的指南支持为血友病患者（PWH）提供公平、最佳的护理。然而，目前关于血友病患者的生活体验或他们可能遇到的护理障碍的研究有限。本探索性研究的主要目的是描述加拿大血友病患者的体验。
我们采用半结构式访谈指南进行了定性描述性研究，并使用归纳主题内容分析对转录访谈进行了分析。纳入标准为：年龄≥18 岁，英语流利，且确诊为遗传性血友病 A 或 B。
共对 11 名参与者进行了访谈。中位年龄为 39 岁（29-73 岁），诊断包括重型血友病 A（n=5）、轻型血友病 A（n=2）和重型血友病 B（n=4）。出现了 3 个主要主题：（1）对身份和日常生活的影响；（2）治疗的动态变化；（3）护理障碍和确定的需求。主要子主题包括慢性疼痛和活动受限、心理社会负担和症状正常化。多学科护理、协调的外科护理、改善的急诊护理以及明确的护理计划被认为是持续存在的需求。
血友病患者描述了严重的症状负担和持续存在的需求领域。血液科医生、急诊室医生和外科医生之间的协作努力，以建立医院特定的检测、治疗和转诊指南，并定期进行血友病治疗中心审核，可能有助于解决这些护理差距，提供更以患者为中心、公平的护理。需要进一步开展工作来实施这些策略并监测其效果。
