Family functioning in pediatric heart transplantation: Variables associated with poor outcomes

Abstract

Family functioning is integral in a child's life and is linked to quality of life in health as well as disease. This has been scarcely studied in pediatric orthotopic heart transplantation (pOHT). In this study, we evaluate demographic and clinical factors associated with family functioning in this patient population. Pediatric post-transplant families were recruited in an outpatient setting (n = 71). The PedsQL Family Impact Module was administered, along with the Parent and Adolescent Medication Barriers Scales (PMBS; AMBS) and the McArthur socioeconomic scale. Associations between clinical and demographic variables and scaled scores were evaluated. In our sample, patients with congenital heart disease, developmental delay, and enteral feeding had lower total impact (P = .026; P = .011; P = .008) and parent self-reported HRQL scores (P = .018; P = .012; P = .005). Patients with developmental delay and enteral feeding also had lower family functioning summary scores (P = .025; P = .031). Higher parent educational status was associated with lower total impact scores (P = .043). Higher PMBS scores demonstrated negative correlation with total impact (P < .001), parent self-reported HRQL (P < .001), and family functioning summary scores (P = .003). Multiple linear regression analysis identified developmental delay, parental education, and PMBS as independent variables associated with family functioning. Our study highlights important factors impacting family functioning in pOHT. Developmental delay, higher parental education, and PMBS were associated with poorer family functioning. Our findings emphasize the need for a multidisciplinary approach including serial psychological assessment and interventions in the management of pOHT patients in order to optimize family functioning. K E Y W O R D S family functioning, health-related quality of life, pediatric heart transplant, PedsQL Family Impact Module 1 | INTRODUC TI ON Pediatric orthotopic heart transplantation (pOHT) and its effects on psychosocial functioning are significant. Previous studies show that 1 in 3 pOHT recipients have impaired psychosocial functioning and approximately 24% of recipients experience significant symptoms of psychological distress during the first year post-transplant.

Neuropsychological and biopsychosocial evolution, therapeutic adherence and unmet care needs during paediatric transplantation: study protocol of a mixed-methods design (observational cohort study and focus groups) – the TransplantKIDS mental health project

“…As mentioned above, the use of standardized measures (neuropsychological tests and biopsychosocial questionnaires) by the Mental Health team during the entire transplantation process will allow the early detection of potential neuro−/psychosocial problems, as well as the implementation or prescription of the adequate specific intervention (therapeutic or preventive) that may be required at an early stage ( Karakizlis et al, 2022 ). For example, family disfunctions can be identified during any stage of the transplantation process so that an early intervention can be applied by Mental Health professionals ( Cushman et al, 2019 ; Liu et al, 2020 ; Tadros et al, 2020 ). Consequently, this is expected to have a positive impact on the prognosis of the neurocognitive and mental health problems detected.…”

Predicting health outcomes through machine learning in pediatric heart transplantation: Use of national data from the United Network for Organ Sharing

“…Importantly, these datasets also lack data collected on psychological, social, and environmental factors, which can predict medication adherence and other long-term outcomes. In addition to medical factors, psychosocial variables and family functioning are known to affect outcomes [42][43][44]. Usually, the psychosocial variables and family functioning are not well represented and due to their inherent changing nature are hard to capture in these databases.…”