Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases

Abstract

Over the last 5 decades, health-care advances have yielded quantum improvements in the life expectancy of individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related health-care issues, whereas adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This paper outlines identified research needs.

Figure 1. Factors related to urologic care and outcomes across the lifespan

Across several functional domains—including health, social and emotional well-being, productivity and self-management— several factors related to urological and health outcomes become increasingly relevant during the period of transition from childhood to adulthood. For example, sexuality, functional independence, and integration into the workplace all demonstrate relatively greater importance during young adulthood than they did in pediatric life. UTI: urinary tract infection.

Figure 2. Schematic Diagram of Breakout Sessions by Groups and Topics of Discussion

The meeting included two sets of breakout groups. First, six multidisciplinary groups of participants identified research areas of highest and intermediate need across six condition-based areas. Then, participants reassembled into six groups to organize the identified condition-based needs across scientific disciplines. Afterwards, all participants reconvened for a facilitated discussion to summarize major research needs. LUT: lower urinary tract; NGB: neurogenic bladder