Department of Pediatrics, Emory University School of Medicine, Atlanta, GA.
Department of Pediatrics, Emory University School of Medicine, Atlanta, GA.
Am Heart J. 2024 Dec;278:150-160. doi: 10.1016/j.ahj.2024.09.003. Epub 2024 Sep 17.
With improved survival of adults with congenital heart disease (CHD) comes a need to understand the lifelong outcomes of this population. The aim of this paper is to describe the rationale and design of Congenital Heart Disease Project to Understand Lifelong Survivor Experience (CHD PULSE), a study to determine long-term medical, neurocognitive, and psychosocial outcomes among adults with a history of intervention for CHD and to identify factors associated with those outcomes.
CHD PULSE is a cross-sectional survey conducted from September 2021 to April 2023 among adults aged 18 and older with a history of at least 1 intervention for CHD at 1 of 11 participating U.S. centers in the Pediatric Cardiac Care Consortium. Participants with CHD were asked to complete a 99-question survey on a variety of topics including: demographics, surgeries, health insurance, health care, heart doctors, general health, height and weight, education and work history, reproductive health (for women only), and COVID-19. To construct a control group for the study, siblings of survey respondents were invited to complete a similar survey. Descriptive statistics for demographics, disease severity, center, and method of survey completion were computed for participants and controls. Comparisons were made between participants and non-participants to assess for response bias and between CHD participants and sibling controls to assess for baseline differences.
Among the 14,322 eligible participants, there were 3,133 respondents (21.9%) from 48 U.S. states with surveys returned for inclusion in the study. Sibling contact information was provided by 691 respondents, with surveys returned by 326 siblings (47.2%). The median age of participants was 32.8 years at time of survey completion, with an interquartile range of 27.2 years to 39.7 years and an overall range of 20.1 to 82.9 years. Participants were predominantly female (55.1%) and of non-Hispanic White race/ethnicity (87.1%). There were no differences between participants and non-participants regarding severity of CHD. Compared to nonparticipants, participants were more likely to be female, of older age, and be of non-Hispanic White race/ethnicity. Enrolled siblings were more likely to be female and slightly younger than participants.
With surveys from 3,133 participants from across the U.S., CHD PULSE is poised to provide keen insights into the lifelong journey of those living with CHD, extending beyond mere survival. These insights will offer opportunities for informing strategies to enhance and improve future outcomes for this population of patients.
随着先天性心脏病（CHD）成人患者存活率的提高，人们需要了解这一人群的终身预后。本文旨在描述先天性心脏病患者理解长期生存者体验项目（CHD PULSE）的基本原理和设计，该项目旨在确定曾接受 CHD 干预的成年人的长期医疗、神经认知和社会心理结局，并确定与这些结局相关的因素。
CHD PULSE 是一项横断面调查，于 2021 年 9 月至 2023 年 4 月在美国儿科心脏护理联合会的 11 个参与中心之一的至少有 1 次 CHD 干预史的 18 岁及以上成年人中进行。有 CHD 的参与者被要求完成一份 99 个问题的调查问卷，内容涉及各种主题，包括：人口统计学、手术、医疗保险、医疗保健、心脏病专家、一般健康状况、身高和体重、教育和工作经历、生殖健康（仅限女性）和 COVID-19。为了为该研究构建对照组，邀请了调查对象的兄弟姐妹完成一份类似的调查问卷。对参与者和对照组的人口统计学、疾病严重程度、中心和调查完成方法进行了描述性统计。对参与者和非参与者进行了比较，以评估应答偏差；对 CHD 参与者和兄弟姐妹对照组进行了比较，以评估基线差异。
在 14322 名合格参与者中，有 1433 名来自美国 48 个州的参与者完成了调查并返回，纳入研究。691 名参与者提供了兄弟姐妹的联系方式，其中 326 名兄弟姐妹（47.2%）完成了调查。参与者完成调查时的中位年龄为 32.8 岁，四分位距为 27.2 岁至 39.7 岁，总范围为 20.1 岁至 82.9 岁。参与者主要为女性（55.1%），非西班牙裔白人（87.1%）。CHD 严重程度方面，参与者和非参与者之间没有差异。与非参与者相比，参与者更有可能为女性，年龄更大，为非西班牙裔白人。入组的兄弟姐妹更有可能为女性，年龄略小于参与者。
通过来自美国各地的 3133 名参与者的调查，CHD PULSE 有望深入了解 CHD 患者的终身历程，不仅局限于单纯的生存。这些发现将为制定策略提供机会，以改善这一患者群体的未来结局。
