Dagur Gautam, Kleinmahon Jake A, Gurvitz Michelle Z, Acosta Rebeka, Bora Samudragupta
Mater Research Institute, Faculty of Health, Medicine and Behavioural Sciences, The University of Queensland, Brisbane, QLD, Australia.
Ochsner Clinical School, Faculty of Health, Medicine and Behavioural Sciences, The University of Queensland, New Orleans, LA, USA.
Pediatr Res. 2025 Jul 15. doi: 10.1038/s41390-025-04247-y.
Characterize attendance at neurodevelopmental follow-up for congenital heart disease (CHD) from infancy to young adulthood, as well as identify individual, family, and neighborhood-level correlates of low attendance.
Primary caregivers (N = 578) of children with CHD aged 0-21 years in the United States, stratified into six age groups, reported whether their child had attended neurodevelopmental follow-up at various time points. Caregiver reports were also used to collect information on the child's clinical and family psychosocial characteristics. ZIP codes provided neighborhood-level information.
Overall, 51% (n = 296/578) of children with CHD had attended at least one age-appropriate neurodevelopmental follow-up. Attendance relative to age-appropriate appointments decreased with age, with <3% aged 6-21 years attending 100% of age-appropriate follow-up. Low (<50% age-appropriate) attendance was associated (p < 0.05) with older child age, racial and ethnic minority group status of mother, more social support from extended family, shorter duration of first ICU stay, lack of grandparents' involvement in childcare, travel distance of ≥60 miles from pediatric cardiology center, limited economic and educational opportunities in the neighborhood, and biventricular diagnosis.
The findings underscore the necessity of targeted intervention, with a particular emphasis on the social determinants of health framework, to improve the attendance of children with CHD at neurodevelopmental follow-up.
In a U.S. sample, primary caregivers reported that 51% of children with congenital heart disease attended at least one age-appropriate neurodevelopmental follow-up appointment. Attendance rates declined with age, and clinical factors like shorter initial ICU stay and biventricular diagnosis were associated with low attendance. Low attendance was also associated with non-clinical factors like maternal race and ethnicity, family social support, proximity to the cardiology center, and economic and educational opportunities in the neighborhood, highlighting the importance of taking social determinants of health into account while considering opportunities to increase neurodevelopmental follow-up attendance.
描述从婴儿期到青年期先天性心脏病（CHD）患者神经发育随访的就诊情况，并确定低就诊率的个体、家庭和社区层面的相关因素。
美国578名0至21岁CHD患儿的主要照顾者分为六个年龄组，报告其孩子在不同时间点是否参加了神经发育随访。照顾者的报告还用于收集孩子的临床和家庭心理社会特征信息。邮政编码提供社区层面的信息。
总体而言，51%（n = 296/578）的CHD患儿至少参加了一次适合其年龄的神经发育随访。相对于适合年龄的预约就诊率随年龄增长而下降，6至21岁的患儿中<3%的人100%参加了适合年龄的随访。低就诊率（<50%适合年龄）与患儿年龄较大、母亲的种族和族裔少数群体身份、来自大家庭的更多社会支持、首次入住重症监护病房（ICU）的时间较短、祖父母未参与儿童照料、距离儿科心脏病中心≥60英里的出行距离、社区有限的经济和教育机会以及双心室诊断有关（p < 0.05）。
研究结果强调了有针对性干预的必要性，尤其要强调健康的社会决定因素框架，以提高CHD患儿在神经发育随访中的就诊率。
在美国的一个样本中，主要照顾者报告称，51%的先天性心脏病患儿至少参加了一次适合其年龄的神经发育随访预约。就诊率随年龄下降，较短的初始ICU住院时间和双心室诊断等临床因素与低就诊率有关。低就诊率还与母亲的种族和族裔、家庭社会支持、与心脏病中心的距离以及社区的经济和教育机会等非临床因素有关，这凸显了在考虑增加神经发育随访就诊率的机会时考虑健康的社会决定因素的重要性。
