Health Related Quality of Life in Children With Urological Disease

描述（由申请人提供）：

DESCRIPTION (provided by applicant): My long-term goals are to conduct multidisciplinary clinical research in pediatric urology, and to translate these findings into improved care for children with urologic disease. Over the next five years, I plan to develop my skills in study design, longitudinal data analysis, and qualitative and quantitative methods. The clinical and intellectual resources available at Johns Hopkins provide an ideal environment in which to conduct this research. The clinical resources of the Johns Hopkins Pediatric Urology Clinic and the Kennedy Krieger Spina Bifida Multidisciplinary Clinic provide a solid basis for undertaking patient-oriented clinical research. Research mentorship of Dr. Susan Furth in the Welch Center for Prevention, Epidemiology and Clinical Research at Johns Hopkins will allow me to benefit from access to data from a national prospective cohort study of children with chronic kidney disease. The objective of the proposed research is to develop an approach to patient-based assessment of outcomes in children with urological disease. Specific Aim 1: To assess the impact of abnormal bladder function and incontinence on health related quality of life (HRQOL) in children using cross-sectional analysis. Two generic HRQOL instruments, the Child Health and Illness Profile-Adolescent Edition (CHIP-AE) and the Child Health Questionnaire (CHQ) will be administered to children with urological disease. Baseline HRQOL measured by the PedsQL will be analyzed in the Chronic Kidney Disease in Children (CKiD) national cohort study. Specific Aim 2: To pilot test a new condition-specific questionnaire among 30 adolescents with abnormal bladder function or incontinence. Specific Aim 3: To prospectively determine the effect of abnormal bladder function and incontinence on HRQOL in children with CKD using longitudinal data on incontinence, bladder function, and HRQOL among CKiD participants. While many surgical and medical interventions are available to help treat incontinence in children, there is no reliable way to assess the success of these treatments. The significance of a valid, well-designed approach to measuring HRQOL in this population is that it would provide a way to assess the impact and utility of different interventions for urinary incontinence in children.