Caregiver-reported barriers to care for children and adults with Williams Syndrome

TL;DR

This study explores the challenges caregivers face in accessing healthcare for individuals with Williams Syndrome, focusing on factors like age, income, and provider availability.

Contribution

The study identifies specific demographic correlations with healthcare barriers in Williams Syndrome using a caregiver-reported questionnaire.

Findings

Younger age correlates with higher barriers in communication and skills subscales.

Lower income and longer distances to knowledgeable providers are linked to greater overall care barriers.

The Barriers to Care Questionnaire effectively identifies demographic influences on healthcare access.

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.

The online version contains supplementary material available at 10.1007/s12687-024-00707-w.

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