Barnhardt Elizabeth W, Martens Marilee, Andridge Rebecca, Walton Jennifer
Section of Developmental and Behavioral Pediatrics, Nationwide Children's Hospital, 380 Butterfly Gardens Drive, Columbus, OH, USA.
Department of Psychology, Nationwide Children's Hospital, 380 Butterfly Gardens Drive, Columbus, OH, USA.
J Community Genet. 2024 Aug;15(4):375-386. doi: 10.1007/s12687-024-00707-w. Epub 2024 May 22.
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.
患有威廉姆斯综合征（WS）的个体可能会面临各种医疗、行为和教育方面的问题。本研究的主要目的是评估WS患者获得医疗保健的障碍，主要使用医疗保健障碍问卷（BCQ），并评估各种人口统计学因素是否与这些障碍相关。通过威廉姆斯综合征协会研究登记处分发了一份REDCap调查问卷。美国319名WS患者的护理人员完成了BCQ。在BCQ上，得分越低表明护理障碍越多。年龄较小与语用学和技能子量表得分较低相关，而收入水平较低以及与了解WS的医疗服务提供者的距离增加则始终与BCQ总分较低相关。
