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.
摘要：
威廉姆斯综合征（WS）患者可能会经历各种医疗，行为，和教育问题。这项研究的主要目的是评估WS患者的医疗保健障碍，主要使用护理障碍问卷(BCQ)，并评估各种人口因素是否与这些障碍相关。使用威廉姆斯综合症协会研究登记处分发了REDCap调查。在美国，319名患有WS的个人的护理人员完成了BCQ。在BCQ上，较低的分数表明更多的护理障碍。年龄较小与语用和技能量表的得分较低相关，而收入水平较低和与了解WS的提供者的距离增加始终与BCQ总分较低相关。
