Rationale and design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience

IF 3.7 2区医学 Q1 CARDIAC & CARDIOVASCULAR SYSTEMS

American heart journal Pub Date : 2024-09-17 DOI:10.1016/j.ahj.2024.09.003

Matthew E. Oster MD MPH , Yanxu Yang DrPH , Caroline Shi MPH , Susan Anderson BA , Jessica Knight PhD , Logan G. Spector PhD , Osamah Aldoss MD , Charles E. Canter MD , Mansi Gaitonde MD , Gurumurthy Hiremath MD , Anitha John MD , Deborah J. Kozik DO , Bradley S. Marino MD , Kimberly E. McHugh MD , David Overman MD , Geetha Raghuveer MD , James Louis St. MD , Jeffrey P. Jacobs MD , Michelle Gurvitz MD, MPH , Grace Smith BS , Lazaros K. Kochilas MD, MSCR

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引用次数: 0

Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.

查看原文本刊更多论文

先天性心脏病 PULSE：了解幸存者终生经历的先天性心脏病项目的原理和设计。

背景：随着先天性心脏病（CHD）成人存活率的提高，人们需要了解这一人群的终生结局。本文旨在介绍 "了解先天性心脏病患者终生生存体验项目"（CHD PULSE）的原理和设计，该项目旨在确定有先天性心脏病干预史的成年人的长期医疗、神经认知和社会心理结果，并确定与这些结果相关的因素：CHD PULSE 是一项横断面调查，调查时间为 2021 年 9 月至 2023 年 4 月，调查对象为 18 岁及以上曾在美国儿科心脏病护理联盟的 11 个参与中心之一接受过至少一次心脏病干预的成年人。患有先天性心脏病的参与者需要完成一份包含 99 个问题的调查，内容涉及人口统计学、手术、医疗保险、医疗保健、心脏病医生、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）以及 COVID-19。为建立研究对照组，调查对象的兄弟姐妹也受邀完成了类似的调查。对参与者和对照组的人口统计学、疾病严重程度、中心和调查完成方式进行了描述性统计。对参与者和非参与者进行了比较，以评估回复偏差，并对 CHD 参与者和兄弟姐妹对照组进行了比较，以评估基线差异：在符合条件的 14,322 名参与者中，有来自美国 48 个州的 3133 名受访者（21.9%）寄回了调查问卷，并被纳入研究范围。691名受访者提供了兄弟姐妹的联系信息，326名兄弟姐妹（47.2%）交回了调查问卷。完成调查时，参与者的年龄中位数为 32.8 岁，四分位数之间的范围为 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%）和非西班牙裔白人（87.1%）。参与者和非参与者在心脏病严重程度方面没有差异。与非参与者相比，参与者更可能是女性、高龄者和非西班牙裔白人。与参与者相比，参与者的兄弟姐妹更可能是女性，且年龄略小：通过对全美 3133 名参与者的调查，CHD PULSE 将为心脏病患者的终生历程提供敏锐的洞察力，而不仅仅是生存。这些洞察力将为制定相关策略提供机会，以提高和改善这类患者的未来治疗效果。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

American heart journal 医学-心血管系统

CiteScore

8.20

自引率

2.10%

发文量

214

审稿时长

38 days

期刊介绍： The American Heart Journal will consider for publication suitable articles on topics pertaining to the broad discipline of cardiovascular disease. Our goal is to provide the reader primary investigation, scholarly review, and opinion concerning the practice of cardiovascular medicine. We especially encourage submission of 3 types of reports that are not frequently seen in cardiovascular journals: negative clinical studies, reports on study designs, and studies involving the organization of medical care. The Journal does not accept individual case reports or original articles involving bench laboratory or animal research.