Introduction: Despite the many symptoms that women with inherited bleeding disorders experience, no study has specifically sought to explore and understand the lived experiences of these women, nor the barriers to care that they may encounter. The primary objective of this study was to describe the lived experiences of women with inherited bleeding disorders. Methods: 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 through identification by treating health-care providers and study members of the Canadian Hemophilia Society. Telephone interviews were conducted using a semi-structured interview style, transcribed verbatim, and analyzed using descriptive thematic analysis. Results: A total of 15 participants were interviewed. Median age was 31 years (24-70 years old). Four primary themes emerged: uncertainties surrounding diagnosis, conceptualization of experience through family bleeding, intensity of bleeding symptoms, and impact of bleeding on identity and daily life.

Introduction: 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. Methods: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.Results: 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. Discussion: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.

PLOS ONE | https://doi.

Introduction: Despite the manifold symptoms that women with inherited bleeding disorders may experience, no study has specifically sought to understand the lived experiences of these women, nor the barriers to care that they may face. Indeed, the literature on this topic remains sparse. A MEDLINE search assessing literature on access to care for women with inherited bleeding disorders yielded 526 abstracts; of these, only a small subset (N=12) focused on women's health, and less (N=2) made any note of potential barriers to care. Given the lack of data on this subject to date, the objective of this qualitative descriptive study was to understand women's lived experiences with inherited bleeding disorders, and their perceptions around access to care. Methods: A semi-structured qualitative interview guide was developed in conjunction with experienced hematologists (MS and RW), patient advocates from the Canadian Hemophilia Society (CHS; PW and DP), and a qualitative research expert (KD). Inclusion criteria for study enrollment included age ≥ 18 years old, English-speaking, and confirmed diagnosis of an inherited bleeding disorder. Women were recruited across Canada through identification by treating healthcare providers and study members of the CHS. They were then consented for telephone interview by SA. Interviews were transcribed verbatim, and analyzed using descriptive thematic analysis on NVIVO software. A random selection of interviews was coded by 2 team members (SA, KD) to ensure similar data interpretation. Results: Ten interviews with women with bleeding disorders were completed. Ages ranged from 24-70, and diagnoses included hemophilia B carriership (N=2), hemophilia A carriership (N=2), von Willebrand disease (N=2), disorders of platelet function (N=3) and dysfibrinogenemia (N=1). Common themes in the data included diagnostic uncertainty, affected family members, bleeding disorders' effect on life, the importance of treatment plans, experienced barriers, and access to care factors (Table 1). The most common barriers to care noted were healthcare provider dismissal of bleeding symptoms, lack of healthcare provider awareness, geographical barriers, and perceived barriers specific to women. Patients noted the importance of as-needed treatment, treatment for abnormal uterine bleeding, iron supplementation, and the need for family planning. They also highlighted the importance of access to clinic and treatment, and the need for self-advocacy. Discussion: To our knowledge, this is the first study to assess lived experiences and barriers to care for women with inherited bleeding disorders. Our data indicates that women often feel dismissed by healthcare providers, and feel disempowered by not feeling understood or heard. These results may have implications for the ways in which healthcare providers communicate with their patients, particularly in the face of diagnostic uncertainty or predominantly gynecologic-related bleeding symptoms. By better understanding patients' lived experiences, providers may be able to provide more comprehensive, person-centered care. Disclosures Teitel: Novo Nordisk: Consultancy; Octapharma: Consultancy; CSL Behring: Consultancy; Pfizer: Consultancy, Research Funding; Bayer: Consultancy, Research Funding; Shire: Consultancy; BioMarin: Consultancy. Sholzberg:Novartis: Honoraria; Amgen: Honoraria, Research Funding.

Introduction: 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. Methods: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.Results: 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.Discussion: 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.