PB1147 - Sexism in Hemophilia? Identifying Disparities in Care of Symptomatic Hemophilia Carriers in a Comprehensive Hemophilia Treatment Center

Background: In 2021, an expert consensus publication about hemophilia in women and girls defined new nomenclature and highlighted the need for a more inclusive classification system to enhance awareness and improve clinical diagnosis and care. As a quality improvement measure, we sought to evaluate the cadence of clinical care for and classification of women and girls with hemophilia (W/GH) and hemophilia carriers (HC) at our hemophilia treatment center (HTC). We currently recommend clinic visits at least every 2 years for these female patients regardless of baseline factor level, as compared to every 6 months or yearly for males with severe or moderate/mild hemophilia, respectively.

Aims: We aimed to quantify baseline cadence of care for W/GH and symptomatic HC at our HTC prior to a strategic initiative to improve clinical follow up of these patients.

Methods: A retrospective analysis of our HTC’s medical database was performed to assess timing of clinical care, age, factor activity, and bleeding symptoms of W/GH and symptomatic HC. Logistic regression analysis was performed to identify factors associated with compliance with recommended 2-year follow up.

Results: 79 symptomatic HC were identified in the medical database (clinical data summarized in table 1). 69.6% of symptomatic HC have HTC clinic visit history outside of recommended intervals: 43% of HC have not attended clinic in more than 2 years, 26.6% of HC have never attended clinic. Logistic regression of clinic visit attendance in all HC revealed a weak negative correlation with age (p=0.021, r=-0.036).

Conclusion(s): Improving the experience and outcomes of W/GH and symptomatic HC may require institutional identification of gaps in care. The striking finding that over two-thirds of carriers at our HTC are not receiving care within the recommended interval calls for further investigation to ensure adequate engagement and reduce disparities in care of this population.