Experiences and attitudes of young adults with congenital bowel and bladder conditions

Young adults with complex congenital bowel and bladder anomalies are a vulnerable population at risk for poor health outcomes. Their experiences with the healthcare system and attitudes towards their health are understudied. Our objective was to describe how young adults with congenital bladder and bowel conditions perceive their current healthcare in the domains of bladder and bowel management, reproductive health, and transition from pediatric to adult care. At a camp for children with chronic bowel and bladder conditions, we offered a 50-question survey to the 62 adult chaperones who themselves had chronic bowel and bladder conditions. Of the 51 chaperones who completed the survey (a response rate of 82%), 30 reported a congenital condition and were included. The cohort of 30 respondents had a median age of 23 years and almost half of the subjects (46%) reported not having transitioned into adult care. Most reported bowel (81%) and bladder (73%) management satisfaction despite high rates of stool accidents (85%), urinary accidents (46%), and recurrent urinary tract infections (70%). The majority of respondents (90%) expressed interest in having a reproductive health provider as part of their healthcare team. The median ages of the first conversation regarding transition to adult care and feeling confident in managing self-healthcare were 18 and 14 years, respectively. Most (85%) reported feeling confident in navigating the medical system. In this cohort of young adults who reported confidence with self-care and navigating the medical system, the proportion who had successfully transitioned into to adult care was low. These data highlight the need for improved transitional care and the importance of patient-provider and provider–provider communication throughout the transition process. These data highlight the need to understand the experience of each individual patient in order to provide care that aligns with their goals.Summary TableResponses from the n=30 young adults with congenital bowel and bladder conditions.Age of respondents (median years, IQR)23 years (21–29)Rate of stool accidents85% (22/26)Reported satisfaction of bowel management81% (21/26)Rate of urinary accidents46% (12/26)Rate of recurrent urinary tract infections70% (19/27)Reported satisfaction of bladder management73% (19/26)Interest in having reproductive health provider as part of the team90% (17/19)Have transitioned out of pediatric care54% (13/24)Age of first conversation about tra