Adolescent health-related quality of life following liver and kidney transplantation

Health perceptions of adolescent transplant patients should be considered in providing appropriate healthcare. Objectives: (i) quantify health-related quality of life (HRQOL) in adolescent liver and kidney transplant patients, (ii) compare caregiver ratings of their children's HRQOL to adolescent self-reports and (iii) examine the relationship between HRQOL and disease-specific disability (DSD). Adolescent liver (n = 51) and kidney (n = 26) transplant recipients and caregivers were surveyed using the CHQ-CF87 and CHQ-PF50. DSD scores were calculated for each patient. The response rate was >70%. Adolescent's psychological and physical health was similar to a healthy population, but general health poorer (p = 0.0006). Caretakers reported lower physical functioning and general health (p = 0.0001) but similar psychological health to a normative population. All caregivers expressed negative emotional impact of their child's health on themselves and family activities (p = 0.0001). Positive correlations were found between liver transplant recipients and caregivers: perceptions of behavior (ICC = 0.55, p < 0.001), mental health (ICC = 0.56, p < 0.001), self-esteem (ICC = 0.68, p ≤0.001). Positive correlations were found for kidney transplant patients and caregivers: physical function (ICC = 0.85, p < 0.001), bodily pain (ICC = 0.70, p < 0.001), behavior (ICC = 0.67, p < 0.01). Kidney transplant recipients showed negative correlations between physical functioning (R = -0.76, p = 0.0003) and general health (R = -0.60, p = 0.008) with overall DSD. Physical and psychological functioning of adolescent liver and kidney transplant patients is high. Caregivers may serve as adequate proxies of psychological but not physical health.