Health related quality of life in adolescents with congenital urological disorders
Problem. There are limited data examining health related quality of life (HRQOL) of children with congenital urological disorders. The impact of urinary incontinence and abnormal bladder function on generic HRQOL of children has not been measured. There is a need for a patient-based approach to assess the impact of these urinary-tract symptoms and the outcome of treatment for them.
Methods. Existing well-validated instruments were used to assess generic HRQOL in adolescents with congenital urological disorders. Using previously collected data from the Functional Outcomes in Adolescents with Chronic Kidney Disease (CKD) study, HRQOL of adolescents with underlying urological disorders was measured by the Child Health and Illness Profile-Adolescent Edition (CHIP-AE) and the Child Health Questionnaire-Parent Form 50 (CHQ-PF50) and compared to adolescents with medical causes of CKD and to norms. A multivariable analysis was performed assessing the association of hematocrit with HRQOL as measured by the CHIP-AE in this population. Fifty adolescents with the bladder exstrophy-epispadias complex, spina bifida, or other causes of abnormal bladder function or incontinence prospectively self-administered the CHIP-AE and were compared to norms.
Results. As assessed by the CHIP-AE, HRQOL of adolescents with both medical and urological causes of CKD was comparable to norms, with lower scores seen only in the Disorders Domain. However, using the CHQ-PF50, parents reported that adolescents with CKD due to urological disorders scored lower than norms in many areas of HRQOL. In multivariable analysis, adolescents with CKD and anemia had significantly worse HRQOL as measured by the CHIP-AE compared to those with higher hematocrit. Among adolescents with congenital causes of abnormal bladder function or incontinence, CHIP-AE scores were significantly lower in the Disorders Domain, but largely comparable to or better than norms in all other domains.
Conclusions. Assessment of HRQOL among adolescents with congenital urological disorders varies depending upon the instrument used and whether the parent or child is reporting. The CHQ-PF50 could provide a parent-proxy assessment of generic HRQOL among adolescents with urological disorders. The CHIP-AE may not be sensitive enough to fully detect the impact of abnormal bladder function in this population. Alternatively, adolescents may adapt well to the challenges of their urological disease.
0573: Public health