“They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders

Arya, Sumedha; Wilton, Pamela; Page, David; Boma-Fischer, Laurence; Winikoff, Rochelle; Teitel, Jerome; Dainty, Katie N.; Sholzberg, Michelle

doi:10.1111/jth.15311

Cited by 33 publications

(44 citation statements)

References 24 publications

(52 reference statements)

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“…HMB can be the sentinel symptom of a BD, particularly in adolescents 24 . Barriers to early diagnosis relate to inadequate recognition of symptoms, lack of systematic family inquiry, normalisation of bleeding symptoms within BD families, and insufficient awareness amongst HCPs regarding the impact of BDs 16,18,25 …”

Section: Resultsmentioning

confidence: 99%

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European principles of care for women and girls with inherited bleeding disorders

Galen

Lavin²,

Skouw-Rasmussen³

et al. 2021

Haemophilia

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Introduction Despite increasing awareness of issues faced by women and girls with inherited BDs (WGBD), standards of care are lacking, with disparities in diagnosis and treatment for WGBD across Europe. We aimed to develop practical principles of care (PoC) to promote standardization of care for WGBD within European Haemophilia Treatment and Comprehensive Care Centres (HTC/CCCs). Methods The co‐creation process, supported by the European Association for Haemophilia and Allied Disorders, consisted of four multidisciplinary meetings with health care providers (HCPs) experienced in WGBD care, and European Haemophilia Consortium representatives, combined with broad patient and HCP consultations in the European haemophilia community. Relevant medical societies outside Europe were contacted for confirmation. Results We developed ten PoC for WGBD, stressing the importance and benefits of a centralized, multidisciplinary, comprehensive, family‐centred approach to support and manage WGBD during all life stages. These PoC emphasise the right to equitable access and quality of care for all people with BDs, irrespective of gender. Multiple medical societies outside Europe also confirmed their support for endorsement. Conclusions Ten PoC for WGBD evolved from an iterative process among stakeholders, supported by relevant medical societies worldwide. These PoC can serve as a benchmark for diagnosis and comprehensive multidisciplinary management of WGBD, and improve awareness of their unique challenges. They offer a framework to guide HTC/CCCs in providing equitable care for all WGBD, both in their own services and in other healthcare settings. Implementation of these principles aims to positively impact the health, wellbeing and quality of life for WGBD.

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Section: Resultsmentioning

confidence: 99%

“…HMB is a major issue, consistently reported by WGBD across different inherited BDs, interfering with normal life. Better management is required, clearly evidenced by WGBDs’ experiences 16–18 …”

Section: Introductionmentioning

confidence: 99%

European principles of care for women and girls with inherited bleeding disorders

Galen

Lavin²,

Skouw-Rasmussen³

et al. 2021

Haemophilia

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“…Each focus group described negative experiences of health care arising from the attitudes of, or lack of awareness amongst, non-specialist HCPs, this was also described in a Canadian study of women with inherited bleeding disorders. 6 Most themes were discussed with similar frequency by WHC, WITP and WBD. These included adverse experiences such as lack of empathy and support from HCPs, managing stress and anxiety from living with a bleeding disorder, and positive experiences of knowledgeable and supportive HCPs.…”

Section: Discussionmentioning

confidence: 99%

The views of women with bleeding disorders: Results from the Cinderella study

Khair¹,

Pollard²,

Steadman³

et al. 2022

Haemophilia

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Introduction: Despite therapeutic advances in bleeding disorder treatment, over the past 20 years women with bleeding disorders have reported delayed diagnosis, impaired quality of life, dismissive attitudes from health professionals and inappropriate care. Aim:To explore the lived experience of women with a diagnosed bleeding disorder and to improve understanding of their unmet needs.Methods: Women haemophilia carriers (WHC), women with a diagnosed bleeding disorder (WBD) and women with immune thrombocytopenia (WITP) were invited to complete an online survey. Those who indicated a willingness to be interviewed took part in a focus group or one-to-one interview to further explore their lived experiences.Results: Two hundred and eighty women completed the survey (126 WHC, 96 WBD, 58 WITP) 13 women (seven WHC, three WBD, three WITP) participated in a focus group (11) or individual interview (2). The most frequently reported symptoms were heavy periods (81%) and bruising (81%). Compared to the group as a whole, more WBD took time off work or school due to symptoms, had discussed symptoms with a healthcare professional (HCP), and had seen a nurse or gynaecologist. WHC were least likely to be screened for a bleeding disorder or seen in a specialist setting. Themes discussed included difficulty obtaining a diagnosis, lack of awareness amongst and poor communication from HCPs, stress and anxiety, coping strategies and sources of support. Conclusion:Many of the experiences described by women with bleeding disorders 20 years ago remain prevalent. Healthcare provision needs to change to offer them better treatment and support.

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“…Similar methodology is described for our interviews with women. 11,12 Descriptive statistics were used to present demographic and clinical variables (median, range, frequencies).…”

Section: Parti Cipants and Me Thodsmentioning

confidence: 99%

Invisible bleeds: Lived experiences and barriers to care for men with hemophilia

Arya

Siad

Wilton

et al. 2022

Journal of Thrombosis and Haemostasis

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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.

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“They don’t really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders

Cited by 33 publications

References 24 publications

European principles of care for women and girls with inherited bleeding disorders

European principles of care for women and girls with inherited bleeding disorders

The views of women with bleeding disorders: Results from the Cinderella study

Invisible bleeds: Lived experiences and barriers to care for men with hemophilia

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