Healthcare Disparities for Patients with Inherited Bleeding Disorders

Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders by Arya et al. Summary by guest contributor Hannah Polley

Health inequities represent unjust differences in health status. They are closely tied to social determinants of health, which encompass a broad range of factors including socioeconomic status, education, environment, and access to healthcare. Recognizing the connection between these two concepts is crucial for reducing disparities in health outcomes.

Individuals with inherited bleeding disorders face unique health challenges, often exacerbated by gender and symptom severity. For instance, women with these disorders frequently experience a delay in diagnosis due to many factors including the normalization of bleeding symptoms, stigma surrounding vaginal bleeding, lack of healthcare provider awareness, and limited referrals to specialists. Carriers of hemophilia have been found to encounter dismissive attitudes and a lack of understanding¹.

Complicating matters further, rare bleeding disorders present their own set of challenges. Limited epidemiological data and restricted laboratory testing contribute to the complexity of caring for patients with these conditions.

A recent study² set out to examine health inequities among patients with inherited bleeding disorders. The primary goal was to understand healthcare providers’ perspectives on access to care. The study surveyed healthcare providers and conducted patient interviews to comprehensively capture both patient and provider viewpoints. In Canada, healthcare is publicly funded and there are specialized Hemophilia Treatment Centers across urban locations. Patients can receive necessary blood products and certain treatments for free. Despite this, disparities persist, prompting the study’s inquiry.

Key Findings and Barriers Identified

The study surveyed 70 healthcare providers, with three-quarters of respondents being women. The majority were affiliated with hemophilia treatment centers. Among the barriers identified were:

• Perceived Diagnostic Delay: Factors contributing to delays in diagnosis included mild symptoms, heavy menstrual bleeding as the primary symptom, residence in rural areas, female sex, and being labeled a hemophilia carrier.
• Access to Care for Vulnerable Groups: Respondents recognized limited access to care for patients living in rural areas. Socioeconomic status or visible minority status was not associated with reduced healthcare access.
• Challenges for Rare Disorders: While half of the respondents believed that a rare bleeding disorder diagnosis did not hinder care, the study highlighted concerns related to knowledge gaps, lack of awareness, and limited access to specialized resources.
• Gender-Related Barriers: More than 40% of respondents felt that women with inherited bleeding disorders faced reduced access to care compared to men. Lack of awareness among patients and healthcare providers, referral biases, and stigma around vaginal bleeding were key factors.

Proposed Solutions

Given the findings, the study suggests several strategies to address these challenges:

• Telehealth Initiatives: To minimize barriers for patients in rural areas, telehealth or e-health initiatives could provide remote access to specialized care.
• Patient Education: Education campaigns can raise awareness about bleeding disorder symptoms, emphasizing both mild symptoms and the distinction between ‘normal’ and ‘abnormal’ bleeding.
• Healthcare Provider Training: Training initiatives can provide healthcare providers with the knowledge and tools to better understand and address the unique needs of patients with inherited bleeding disorders.

This study highlights the intricate issue of healthcare disparities for patients with inherited bleeding disorders. By acknowledging the role of social determinants of health, and understanding the challenges faced by these patients, we can pave the way for a more equitable healthcare system.

References

1. Renault NK, Howell RE, Robinson KS, Greer WL. Qualitative assessment of the emotional and beha- vioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia. 2011 Mar; 17(2):237–45. https://doi.org/10.1111/j.1365-2516.2010.02424.x PMID: 21118331
2. Arya S, Wilton P, Page D, Boma-Fischer L, Floros G, Dainty KN, et al. (2020) Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders. PLoS ONE 15(2): e0229099. https://doi.org/ 10.1371/journal.pone.0229099