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Presentation Details
| Prevalence of Social Needs and Their Association with Healthcare Utilization in Von Willebrand Disease Anika Dhingra1, Chengshi Jin1, 2, Sophie Shean3, Zahara Jones3, Mary Lesh3, Katrina Unpingco3, Alison Matsunaga1, 3, Shreya Agarwal1, 3. 1School of Medicine, University of California San Francisco, San Francisco, CA, USA.2Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, CA, USA.3Division of Hematology, Department of Pediatrics, University of California San Francisco, San Francisco, CA, USA |
Abstract
Background: Von Willebrand disease (VWD) is the most common inherited bleeding disorder. Patients can present with a spectrum of symptoms, such as mucocutaneous bleeds, menorrhagia and life-threatening bleeding events, that can result in significant morbidity and reduced quality of life (QoL). While research has traditionally focused on the genetic, biological, and clinical aspects of VWD, emerging evidence across chronic diseases demonstrates that social determinants of health (SDoH) also play a critical role in patient outcomes. Factors such as financial strain and limited social support can significantly influence patients’ ability to access specialty care and manage chronic symptoms. However, the prevalence of social needs and their association with clinical outcomes among people with bleeding disorders, such as VWD, remains poorly understood. Objectives: The primary objectives of this study were to determine the prevalence of social needs among patients with VWD and to evaluate the association between social needs and clinical outcomes. Methods: We conducted a survey-based study using a validated 9-item SDoH questionnaire to assess social needs among patients with VWD followed at our pediatric hemostasis and thrombosis center (HTC). A composite SDoH score was generated from the survey, with a higher score indicating greater social needs. Demographics and clinical outcomes, including a history of anemia, number of emergency visits, number of hospitalizations, number of no shows to the hematology clinic, and missed school due to their bleeding disorder, were extracted from the respondent’s electronic medical record. Descriptive statistics were used to summarize demographics, and associations between social needs and adverse clinical outcomes were assessed using Mann-Whitney and chi-square tests. Results: A total of 38 patients (median age=14.5 years) completed the survey. Participants were predominantly female (n=21, 55%) with diverse racial and ethnic backgrounds (Table 1). The majority of patients had type 1 VWD (n=33 86.8%), and the remainder were type 2M (n=4, 10.5%) and 2A (n=1, 2.6%). Nearly 40% of the cohort reported one or more social needs (n=15). Higher SDoH scores were significantly associated with missed school due to bleeding symptoms (33.3% vs 4.3%, p=0.017). Participants with an SDoH score ≥1 had a higher proportion of emergency department visits (66.7% vs 47.8%, p=0.25) and no-show visits to the HTC over the past 2 years than those with a score of 0, although this was not statistically significant (40% vs 26%, p=0.37) (Table 2). Higher SDoH score was not significantly associated with anemia (46.7% vs 47.8%, p=0.94) or more frequent hospitalizations (20.0% vs 17.4%, p=0.84). Conclusions: Our findings demonstrate that social needs are prevalent among patients with VWD and may influence their healthcare engagement and daily functioning. Those with social needs had higher rates of school absenteeism, which may reflect the impact of VWD on their QoL. These individuals also had higher proportions of hematology no-show and emergency department visits, which may demonstrate difficulties in accessing specialty care. These findings underscore the importance of incorporating SDoH assessment into routine bleeding disorder care to better identify unmet needs and guide interventions aimed at improving equitable access, disease management, and patient well-being.
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No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.