Abstract Body (Do not enter title and authors here): Background: Resilience describes an individual’s ability to leverage internal strengths, external support, and acquired skills to maintain wellbeing amidst stressors. Individuals with Fontan-palliated congenital heart disease (CHD) often face physical and psychological stressors, yet some report resilience amidst these circumstances. While resilience is linked to important physical and psychological outcomes in other chronic illnesses, it is underexplored in pediatric and young adult CHD.
Research Question: This prospective study aimed to 1) characterize self-reported resilience in a multi-center sample of children and young adults with Fontan circulatory failure (FCF) and 2) identify demographic, physical, and psychological factors correlated with resilience.
Methods: Pediatric and young adult patients with Fontan circulation referred for heart failure evaluation at 20 North American pediatric heart centers were eligible. Participants completed the Connor-Davidson Resilience Scale (CD-RISC©). CD-RISC© scores range from 0-40. In adults, scores <29 represent the lowest quartile. In pediatric cancer and adult CHD, mean scores of 29 have been reported. Participants also completed a measure of disease burden/benefit and NIH PROMIS surveys assessing life satisfaction, purpose in life, depression, and anxiety. Medical data was obtained from chart reviews, and frailty was assessed using the Lurz-Wilde pediatric frailty criteria.
Results: The study included 131 participants (60% male, 78% White, median age 16.1 years) with a mean CD-RISC score of 27.2 (SD=7.2; Figure 1). Lower resilience was associated with younger age (p<0.0001), female sex (p=0.01), and hypoplastic left heart syndrome (HLHS; p=0.049). Lower resilience (p=0.001), higher anxiety (p=0.01), and high self-reported disease burden (p=0.02) correlated with frailty. Few objective FCF comorbidities were associated with resilience. In univariate analysis, protein losing enteropathy (PLE; p=0.04) and clinical cyanosis (p=0.053) were associated with lower resilience. In multivariate analysis including age, sex, HLHS diagnosis, and PLE, only younger age and female sex remained independently associated with lower resilience.
Conclusion: Although young people with FCF report high resilience, many indicate opportunities for intervention. The study underlines resilience as a modifiable, critical target for intervention in complex CHD, highlighted by its strong link with frailty over less modifiable comorbidities.