NEW ORLEANS – Single ventricle congenital heart disease (CHD) and worse social determinants of health are associated with more behavior problems and less total competency in children, and this relationship is mediated by disease-related chronic stress, self-perception, and family environment.
Those are key findings from a large analysis of existing cross-sectional data presented at the annual meeting of the American Academy of Pediatrics. The study set out to assess what factors mediate the relationship between CHD severity, social determinants of health, and behavioral and emotional outcomes.
“We know that worse CHD severity is associated with worse parent-reported and self-reported behavioral and emotional functioning in children and adolescents survivors,” lead author, said in an interview. “ by taking measures that would decrease their and their caregivers’ disease-related chronic stress, improve family functioning, and improve the self-perception of the child. While social determinants of health are not modifiable, they are important for predicting which children may be at risk for behavior problems.”
Dr. Qadir, a cardiology fellow in the department of pediatrics at Northwestern University, Chicago, and colleagues performed a corollary analysis of the Pediatric Cardiac Quality of Life Inventory Testing study, an international, multicenter, cross-sectional study in which parents and patients with CHD completed questionnaires measuring behavioral and emotional functioning, self-perception, family environment, family coping, posttraumatic stress, and illness-related parenting stress (see, , and ). They assessed the relationships between CHD severity and social determinants of health (predictors), disease-related stress and psychosocial adaptation (mediators), and behavioral and emotional outcomes. They used structural equation modeling to determine the effects of predictors and mediators on outcomes, and created multivariable models for each patient- and parent-reported outcome.
The analysis included 981 patient-parent dyads. Of these, 210 patients had mild biventricular CHD, 620 had moderate biventricular CHD, and 151 had single ventricle CHD. The mean age of patients was 13 years and 55% were male. The researchers found that single ventricle CHD and worse social determinants of health were significant predictors of greater disease-related chronic stress for patients and caregivers and worse psychosocial adaptation in CHD survivors, including self-perception and family functioning constructs of cohesion and expressiveness (P less than .001 for all associations). In addition, single ventricle CHD and worse social determinants of health were associated with worse behavioral and emotional outcomes as reported by patients and parents, including internalizing behaviors, externalizing behaviors, and total competency (P less than .001 for all associations).
In multivariable models for all parent-reported outcomes, significant associations were observed between single ventricle CHD, social determinants of health, disease-related stress, child receiving mental health services, and cohesion/conflict in the family environment (P less than .001). In multivariable models for all patient-reported outcomes, significant associations were seen between single ventricle CHD, self-perception, and cohesion/conflict in the family environment (P less than 0.001).
Patient disease-related stress had the strongest association with externalizing problems, and worse social determinants of health significantly lowered patient-reported total competency.
“Many of the relationships found in the study make intuitive sense,” Dr. Qadir said. “For example, less favorable social determinants of health were associated with more parent disease-related chronic stress, which in turn was associated with parent-reported behavior problems in children. What was surprising was that worse behavioral outcomes were specifically associated with single ventricle disease only. Complex biventricular congenital heart disease patients (CHD that required a surgical- or catheter-based intervention) often have worse behavioral and emotional outcomes, similar to single ventricle patients. However, our model would argue that biventricular congenital heart disease complexity patients have more behavioral and emotional issues not because of their disease complexity, but due to their social determinants of health and the amount of disease-related chronic stress in the child and the parent and the amount of psychosocial adaptation found in the child and parent.”
Parent and patient disease-related chronic stress was not only an important mediator of the effect of CHD severity and social determinants of health on behavioral and emotional outcomes, he added, but it also had indirect effects that were mediated by family cohesion/conflict and patient self-perception.
“These data suggest that for those children with worse social determinants of health and single ventricle congenital heart disease, interventions that mitigate disease-related chronic stress, promote family functioning, and promote self-perception in the child may improve or optimize behavioral and emotional functioning during childhood and adolescence in CHD surgical survivors,” Dr. Qadir concluded.
He acknowledged certain limitations of the analysis, including the fact that it was a corollary cross-sectional analysis of an existing data set. “The results do not reflect possible changes over time,” he added. “There was also selection bias as non-English speakers were excluded, and the study population had a greater percentage of Caucasian and highly educated parents with higher income than the general population, which may affect the generalizability of our results.”
The researchers reported having no relevant financial disclosures.