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Experiences and attitudes of young adults with congenital bowel and bladder conditions
Christopher J Loftus1, Jennifer Ahn2, Sam Rice-Townsend3
1University of Washington, Department of Urology, 1959 NE Pacific St, Seattle, WA, 98195, USA.
Insights
Young adults with congenital bowel and bladder conditions often lack successful transition to adult care, despite feeling confident in self-management. Improved communication and transitional care are crucial for this vulnerable population.
Area of Science:
- Urology
- Pediatric Surgery
- Healthcare Management
Background:
- Young adults with congenital bowel and bladder anomalies face significant health risks.
- Their healthcare experiences and health attitudes are understudied, highlighting a knowledge gap.
Purpose of the Study:
- To explore young adults' perceptions of healthcare for congenital bladder and bowel conditions.
- Focus areas include management, reproductive health, and transition to adult care.
Main Methods:
- A survey was administered to adult chaperones with chronic bowel and bladder conditions at a specialized camp.
- 30 participants with congenital conditions were included in the analysis.
Main Results:
- Nearly half (46%) had not transitioned to adult care, despite high satisfaction with bowel/bladder management.
- High rates of accidents and UTIs were reported, alongside strong interest in reproductive health services.
- Participants felt confident navigating the medical system, with transition discussions starting at age 18.
Conclusions:
- A low transition rate to adult care was observed in confident young adults.
- Enhanced transitional care and improved communication are vital for this population.
- Individualized patient care aligned with patient goals is essential.
Introduction:
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.
Objective:
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.
Study Design:
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.
Results:
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.
Discussion:
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.
Conclusion:
These data highlight the need to understand the experience of each individual patient in order to provide care that aligns with their goals.
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