Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Canadian Hemophilia Society, Montreal, Quebec, Canada.
J Thromb Haemost. 2021 Jun;19(6):1506-1514. doi: 10.1111/jth.15311. Epub 2021 Apr 18.
Women with inherited bleeding disorders experience excessive bleeding that may impair their quality of life, making early diagnosis and treatment critical. However, the experiences of these women regarding access to care has been minimally described. The primary objective of this study was to evaluate and describe barriers to care for women with bleeding disorders. This study was a continuation of our previous work describing the lived experiences of these women.
We undertook a qualitative descriptive study. Inclusion criteria for study enrollment were the following: age ≥18 years, English-speaking, and confirmed diagnosis of an inherited bleeding disorder. Women were recruited across Canada by treating health-care providers and members of the Canadian Hemophilia Society. Telephone interviews were conducted using a semi-structured interview style, transcribed verbatim, and analyzed using descriptive thematic analysis.
A total of 15 participants were interviewed. Median age was 31 years (range 24-70 years). Four primary themes surrounding barriers to care emerged: (1) lack of health-care provider awareness of bleeding disorders, (2) health-care provider dismissal of symptoms, (3) limited access to specialized care and treatment plans, and (4) need for self-education and advocacy.
We found that women with inherited bleeding disorders experience tension with the health-care system, feeling unheard and poorly understood. Based on our findings, we identified key knowledge and care gaps that could be addressed with awareness and educational initiatives: patient education on vaginal blood loss, updated medical curricula, clear referral guidelines, and telehealth initiatives for patients residing far from hemophilia treatment centers.
患有遗传性出血性疾病的女性会出现过度出血，这可能会降低她们的生活质量，因此早期诊断和治疗至关重要。然而，这些女性在获得医疗服务方面的经历却鲜有描述。本研究的主要目的是评估和描述患有出血性疾病的女性在获得医疗服务方面的障碍。本研究是对我们之前描述这些女性生活经历的研究的延续。
我们进行了一项定性描述性研究。研究纳入标准为：年龄≥18 岁，能讲英语，且确诊患有遗传性出血性疾病。加拿大各地的治疗保健提供者和加拿大血友病协会的成员招募了符合条件的女性参加研究。采用半结构式访谈方式进行电话访谈，将访谈内容逐字转录，并采用描述性主题分析进行分析。
共对 15 名参与者进行了访谈。参与者的中位年龄为 31 岁（范围 24-70 岁）。围绕着获得医疗服务的障碍，有 4 个主要主题浮现出来：（1）医疗保健提供者对出血性疾病缺乏认识，（2）医疗保健提供者对症状的忽视，（3）获得专科护理和治疗计划的机会有限，以及（4）自我教育和倡导的需求。
我们发现，患有遗传性出血性疾病的女性与医疗保健系统之间存在紧张关系，感到自己的声音未被听到，且不被理解。根据我们的研究结果，我们确定了可以通过提高认识和教育举措来解决的关键知识和护理差距：对阴道出血的患者教育、更新医学课程、明确转诊指南，以及为远离血友病治疗中心的患者提供远程医疗服务。
