Abstract Number: PB1147
Meeting: ISTH 2022 Congress
Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Clinical
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.
Table 1.
Clinical data assessed for 79 carriers identified in HTC medical database.
To cite this abstract in AMA style:
Palmer E, Dugan S, Malec L. Sexism in Hemophilia? Identifying Disparities in Care of Symptomatic Hemophilia Carriers in a Comprehensive Hemophilia Treatment Center [abstract]. https://abstracts.isth.org/abstract/sexism-in-hemophilia-identifying-disparities-in-care-of-symptomatic-hemophilia-carriers-in-a-comprehensive-hemophilia-treatment-center/. Accessed September 29, 2023.« Back to ISTH 2022 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/sexism-in-hemophilia-identifying-disparities-in-care-of-symptomatic-hemophilia-carriers-in-a-comprehensive-hemophilia-treatment-center/