Caregiver-reported Barriers to Care for Children and Adults with Williams Syndrome

Overview

Journal J Community Genet

Publisher Springer

Specialty Health Services

Date 2024 May 22

PMID 38776013

Authors

Elizabeth W Barnhardt

Marilee Martens

Rebecca Andridge

Jennifer Walton

Affiliations

Soon will be listed here.

Abstract

Individuals with Williams syndrome (WS) may experience a variety of medical, behavioral, and educational concerns. The primary objective of this study was to assess barriers to health care for patients with WS, primarily using the Barriers to Care Questionnaire (BCQ), and to assess whether various demographic factors are correlated with these barriers. A REDCap survey was distributed using the Williams Syndrome Association Research Registry. 319 caregivers of individuals with WS in the United States completed the BCQ. On the BCQ, lower scores indicate more barriers to care. Younger age was associated with lower scores for both the pragmatics and the skills subscales while lower income levels and increased distances to providers knowledgeable about WS were consistently associated with lower total BCQ scores.

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