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 five decades, healthcare advances have yielded quantum improvements in life expectancy for 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 healthcare issues, while 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 manuscript outlines identified research needs.

The need for specialized training for adults with congenital urologic conditions: differences in opinion among specialties

“…If there were folks interested in adult care that had a pediatric background that would be ideal." • "I'm not sure how many would sign up for this after 2 years of fellowship, although we could all these conditions [4,7]. In North America, all urologists initially complete a urology residency in which they are exposed to both adult and pediatric urology and then pediatric urologists complete an additional two year fellowship specifically in pediatric urology, which adult reconstructive urologists can complete an optional one year fellowship in genitourinary reconstruction surgery (GURS) or two year fellowship in female pelvic medicine and reconstructive surgery (FPMRS).…”

Quality of life: Guidelines for the care of people with spina bifida

“…Especially needed is research that extends the knowledge of what role factors such as finances, ethnic identity, religion and spirituality or aging play in QOL/HRQOL. Knowledge about QOL/HRQOL in the transition to adulthood and adult health care can advance understanding of this important time [ 52 ]. In addition, it is important to determine if measuring QOL/HRQOL in clinical practice actually leads to activities that improve QOL/HRQOL.…”

Barriers in transitioning urologic patients from pediatric to adult care

“…It requires extensive dedication to understand the complex history, anatomy and psychosocial situation of these patients. A thorough understanding of congenital conditions is often lacking in the repertoire of the adult provider due to sub specialization [2,15].…”

“…As parents start to allow their children to assume more responsibility in their care, limitations in a patient's knowledge about their own health condition may reveal itself. In the same way, the inability to perform an adequate self-assessment may arise in patients who lack the necessary skills of healthcare literacy [15].…”