Presentation Details
| Overcoming Distance and Travel Barriers for Virginia Bleeding Disorders Treatment Centers: A Comprehensive Needs Assessment Erika J Martin, Lauren C Dunn, Katherine L Bains, Janice G Kuhn. Virginia Commonwealth University, Richmond, VA, USA |
Abstract
Background: In 2020, the Virginia Department of Health (VDH) contracted with Virginia Commonwealth University (VCU) to conduct a comprehensive needs assessment of Virginia Bleeding Disorders Program (VBDP). VBDP provides services to patients with inherited bleeding disorders through four Hemophilia Treatment Centers (HTCs). Significant changes in health care delivery and financing and advancements in hemophilia therapy led to the need to assess the unmet patient and family (P/F) needs, access to care and needed service adaptations. A key theme of travel and distance barriers emerged from the study findings. Objectives: To identify the unmet P/F needs and to recommend modifications in services to address changes in health care and access to care. Methods: VBDP core team and VCU’s Survey and Evaluation Research Laboratory conducted four focus groups of key stakeholders identified by consumer chapter groups and three separate surveys of P/F, Virginia HTCs, and Non-VA HTCs. Questions assessed unmet P/F needs including services needed to better serve Virginia residents receiving care at HTCs, needs of residents that seek care at HTCs outside of Virginia, impact of changes in healthcare delivery systems, implications of new treatment modalities, distance, and transportation to care, access to telehealth, and outreach to unserved/underserved populations. A systematic analysis of results highlighted key findings. Results: Distance to the HTC or travel barriers was identified as a major theme. Seventy-three percent of VA HTC survey respondents identified distance to treatment was a barrier for half of their patients. Half of the HTCs provided satellite clinics. About half offered telehealth visits with physicians/nurse practitioners, social workers, and mental health providers. Challenges in telehealth visits included inability to do a complete examination (69%), lack of lab coordination (69%), lack of internet connection (50%), increased barriers for patients for whom English is not their first language (44%) and lack of smart phones (38%). Non-VA HTC respondents identified distance or geographic barriers as the main reason patients received care outside of VA. Although the respondents to the P/F survey did not identify distance to HTC as a barrier, 66% of VBDP’s patients lived more than fifty miles from their HTC (Table 1). According to the focus groups, the distance between a patient and an HTC negatively influenced access to care. Participants from all groups identified rural areas in Virginia as regions that had limited or no HTC services. A statewide committee was convened for a year to create strategies to reduce distance or travel barriers. They developed a framework guide for health care providers considering a satellite clinic and collected resources to address availability of mobile devices, WIFI and language services to help patients access telehealth services. The committee presented this information at the 2023 VBDP Annual Stakeholders' meeting attended by all Virginia HTCs, VDH and local chapters. Additionally, resources were shared through the Virginia Hemophilia Foundation’s webpage. Conclusion: The VBDP needs assessment identified distance and travel issues as a barrier to care. This finding led to the creation of a committee to develop strategies to reduce distance as a barrier to care.
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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.