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Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Family functioning in pediatric heart transplantation: Variables associated with poor outcomes
Hanna J Tadros1,2, Alana R Rawlinson3, Emily Martin2
1Department of Pediatrics, University of Florida College of Medicine, Gainesville, FL, USA.
Insights
Family functioning in pediatric heart transplant recipients is impacted by developmental delay, parental education, and medication barriers. These factors highlight the need for multidisciplinary support to improve family well-being post-transplant.
Area of Science:
- Pediatric Cardiology
- Family Medicine
- Psychology
Background:
- Family functioning significantly influences a child's quality of life, particularly in health and disease contexts.
- Research on family functioning in pediatric orthotopic heart transplantation (pOHT) is limited.
- Understanding factors affecting family dynamics is crucial for holistic patient care.
Purpose of the Study:
- To identify demographic and clinical factors associated with family functioning in children post-orthotopic heart transplantation.
- To explore the relationship between specific patient characteristics and family impact.
- To inform interventions aimed at optimizing family well-being in this population.
Main Methods:
- A cohort of 71 pediatric post-transplant families was recruited from an outpatient setting.
- Validated instruments including the PedsQL Family Impact Module, Parent and Adolescent Medication Barriers Scales (PMBS; AMBS), and McArthur socioeconomic scale were administered.
- Statistical analyses, including multiple linear regression, were used to evaluate associations between variables.
Main Results:
- Congenital heart disease, developmental delay, and enteral feeding were linked to lower total impact and parent-reported health-related quality of life (HRQL).
- Developmental delay and enteral feeding correlated with poorer family functioning summary scores.
- Higher parental education was associated with lower total impact, while higher PMBS scores negatively correlated with total impact, parent HRQL, and family functioning.
Conclusions:
- Developmental delay, parental education level, and medication barriers are significant independent predictors of family functioning in pediatric heart transplant recipients.
- These findings underscore the necessity of a multidisciplinary approach, incorporating psychological assessments and interventions.
- Optimizing family functioning is essential for the comprehensive management and improved outcomes of pOHT patients.
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 multi-disciplinary approach including serial psychological assessment and interventions in the management of pOHT patients in order to optimize family functioning.
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