National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
Department of Pediatrics, University of Arizona, Tucson, AZ.
Am Heart J. 2020 Mar;221:106-113. doi: 10.1016/j.ahj.2019.12.021. Epub 2020 Jan 9.
Studies of outcomes among adults with congenital heart defects (CHDs) have focused on those receiving cardiac care, limiting generalizability. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) will assess comorbidities, health care utilization, quality of life, and social and educational outcomes from a US population-based sample of young adults living with CHD.
Individuals with CHD born between 1980 and 1997 were identified using active, population-based birth defects surveillance systems from 3 US locations (Arkansas [AR]; Arizona [AZ]; and Atlanta, Georgia [GA]) linked to death records. Individuals with current contact information responded to mailed survey materials during 2016 to 2019. Respondents and nonrespondents were compared using χ tests.
Sites obtained contact information for 74.6% of the 9,312 eligible individuals alive at recruitment. Of those, 1,656 returned surveys, either online (18.1%) or via paper (81.9%), for a response rate of 23.9% (AR: 18.3%; AZ: 30.7%; Atlanta, GA: 28.0%; P value < .01). For 20.0% of respondents, a proxy completed the survey, with 63.9% reporting that the individual with CHD was mentally unable. Among respondents and nonrespondents, respectively, sex (female: 54.0% and 47.3%), maternal race/ethnicity (non-Hispanic white: 74.3% and 63.0%), CHD severity (severe: 33.8% and 27.9%), and noncardiac congenital anomalies (34.8% and 38.9%) differed significantly (P value < .01); birth year (1991-1997: 56.0% and 57.5%) and presence of Down syndrome (9.2% and 8.9%) did not differ.
CH STRONG will provide the first multisite, population-based findings on long-term outcomes among the growing population of US adults with CHD.
目的：本研究旨在评估美国先天性心脏病（CHD）患者的合并症、医疗保健利用情况、生活质量、社会和教育结局。
方法：利用来自美国 3 个地区（阿肯色州[AR]、亚利桑那州[AZ]和佐治亚州亚特兰大[GA]）的主动、基于人群的出生缺陷监测系统，对 1980 年至 1997 年出生的 CHD 患者进行鉴定，并与死亡记录进行链接。于 2016 年至 2019 年期间，向有当前联系方式的患者邮寄调查问卷。采用卡方检验比较应答者和未应答者。
结果：各研究地点共获得了 9312 名符合入选条件且在世患者的 74.6%的联系方式。其中，1656 人返回了调查问卷，在线（18.1%）或纸质（81.9%）填写，应答率为 23.9%（AR：18.3%；AZ：30.7%；亚特兰大，GA：28.0%；P 值<.01）。20.0%的应答者由代理人完成了调查，其中 63.9%报告该 CHD 患者存在精神障碍。在应答者和未应答者中，女性比例（分别为 54.0%和 47.3%）、母亲种族/民族（分别为非西班牙裔白人：74.3%和 63.0%）、CHD 严重程度（分别为严重：33.8%和 27.9%）和非心脏先天性异常（分别为 34.8%和 38.9%）存在显著差异（P 值<.01）；出生年份（1991-1997 年：分别为 56.0%和 57.5%）和唐氏综合征的存在（分别为 9.2%和 8.9%）则无差异。
结论：CH STRONG 将提供首个美国 CHD 成年患者长期结局的多中心、基于人群的研究结果。
