Prospective study of health-related quality of life in adolescent transplant recipients

Abstract

With improved survival rates for pediatric transplantation, more attention has turned to children’s and adolescents’ health-related quality of life (HRQOL), or physical, mental health, and psychosocial well-being. Poorer psychosocial well-being has been related to physical limitations, intensity of side effects, and lower family support (Dew et al., 2001; Glazer, Emery, Frid, & Banyasz, 2002; Meyers, Thomson, & Weiland, 1996; Simons et al., 2007). Additionally, discrepancies have been noted between parent and child report (Levi & Drotar, 1999; Theunissen et al., 1998). Longitudinal studies are needed to identify predictors of HRQOL and changes in HRQOL over time. The present longitudinal study aimed to expand our understanding of parent versus child reporting of HRQOL and factors related to and predictive of HRQOL over time. Forty-eight adolescents (71% of initial sample; 57% female, 31 kidney, 14 liver, 9 heart) and their parents completed initial and 17-month follow-up assessments. Results showed that parents and adolescents were generally calibrated to each others’ report across HRQOL domains, with the exception of Family Cohesion. However, adolescents reported significantly higher levels of Self-Esteem and General Health Perceptions compared to their parents. Compared to a normative sample, parents reported lower HRQOL for Physical Functioning, General Health Perceptions, Family Activities, overall Physical Summary, and negative Emotional Impact on themselves. Most HRQOL domains were stable across time, but both parents and adolescents reported significantly worse General Health Perceptions at Time 2. After controlling for Time 1 levels, Time 2 General Health Perceptions were predicted by adherence for adolescents’ reports and side effects for parents’ reports. Several medical and family factors were related to adolescent and parent report of HRQOL. After controlling for Time 1 levels, Time 2 Physical Functioning was predicted by hospitalizations for both adolescents’ and parents’ reports. For Time 2 Mental Health, adolescents’ report of side effects and instable immunosuppressant assay levels, and parents’ report of side effects plus family cohesion were predictive of Time 2 functioning after controlling for Time 1 levels. Results suggest that improving family cohesion and parent-adolescent relationships may help improve adolescents’ HRQOL.