Health Related Quality of Life in Children With Urological Disease

描述(由申请人提供)： 我的长期目标是在儿科泌尿科进行多学科的临床研究，并将这些发现转化为改善对患有泌尿系疾病的儿童的护理。在接下来的五年里，我计划发展我在研究设计、纵向数据分析以及定性和定量方法方面的技能。约翰霍普金斯大学现有的临床和智力资源为开展这项研究提供了理想的环境。约翰霍普金斯儿科泌尿外科诊所和肯尼迪克里格脊柱裂多学科诊所的临床资源为开展以患者为中心的临床研究提供了坚实的基础。苏珊·弗思博士在约翰·霍普金斯大学韦尔奇预防、流行病学和临床研究中心的研究指导将使我能够从一项针对慢性肾脏疾病儿童的全国性前瞻性队列研究中获得数据而受益。这项拟议研究的目的是开发一种基于患者的方法来评估患有泌尿系疾病的儿童的结果。具体目的1：采用横断面分析方法评价膀胱功能异常和大小便失禁对儿童健康相关生活质量的影响。两个通用的HRQOL工具，儿童健康和疾病概况-青少年版(CHIP-AE)和儿童健康问卷(CHQ)将被用于患有泌尿系统疾病的儿童。由PedsQL测量的基线HRQOL将在儿童慢性肾脏疾病(CKiD)国家队列研究中进行分析。具体目标2：在30名有膀胱功能异常或大小便失禁的青少年中初步测试一种新的条件特异性问卷。具体目标3：利用CKiD患者的大小便失禁、膀胱功能和HRQOL的纵向数据，前瞻性地确定CKD儿童膀胱功能异常和大小便失禁对HRQOL的影响。虽然有许多手术和医学干预措施可以帮助治疗儿童大小便失禁，但没有可靠的方法来评估这些治疗的成功。一种有效的、设计良好的方法来测量这一人群的HRQOL的意义在于，它将提供一种方法来评估不同干预措施对儿童尿失禁的影响和效用。

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.