Purpose: Despite markedly improved survival for children with single ventricle congenital heart disease (SVCHD), little is known about psychosocial outcomes such as quality of life (QOL), impact on the family (IOF) and functional status (FS). The purpose of this research was to describe reports of QOL, IOF and FS in children with SVCHD and to test the hypothesis that these outcomes are correlated as postulated in health-related quality of life theory. Methods: The Pediatric Quality of Life Inventory, Impact on the Family Scale, and Health Utilities Index were completed by parents of 55 children with SVCHD. Demographic information was abstracted from the record. Results: Mean age 6.4±4.6 yrs, range 2-18yrs, 64% male, 91% completed Fontan palliation. Average time from last operation to survey response was 3.2±2yrs. QOL was reported as lower than a healthy sample for overall, physical, social and school functioning (p<0.05). Compared to a reference sample of children with other chronic conditions, SVCHD QOL was better in overall, physical, and emotional function (p<0.05) and similar for social and school function. Age was negatively correlated with QOL (r=-0.24-0.29, p<0.01). FS demonstrated positive correlations with QOL (r=0.33-0.39, p<0.05). QOL was not correlated with gender, socioeconomic status, number of operations or time since surgery. IOF was less than a normative sample of mothers of children with chronic illness (p<0.05). Negative impact overall and in the areas of financial, social, personal strain and siblings was correlated with lower QOL (r=-0.26-0.58, p<0.05). Conclusions: Children and families surviving surgical palliation of SVCHD are at risk for psychosocial impact in several areas including QOL, IOF and FS. This impact appears to be similar to children living with other chronic conditions. Significant correlations between IOF and QOL highlight the need for ongoing social support for children and their families.
Session #1223 - Graduate Student Poster Session
The 29th Annual MNRS Research Conference (April 1-4, 2005)