Transitioning Adolescents and Young Adults With Neurogastroenterology and Motility Disorders to Adult Care. Current Practices and Challenges in North America.

BACKGROUND

Pediatric neurogastroenterology and motility (NGM) disorders frequently persist into adulthood, yet there are no standardized transition of care (TOC) practices for this patient population. We characterized current TOC practices for adolescents and young adults with NGM disorders across North America.

METHODS

A survey was distributed through listservs for North American pediatric gastroenterologists, registered dietitians, and advanced practice providers. The survey assessed institutional characteristics, TOC practices, team structure, handoff practices, barriers, and unmet needs.

KEY

RESULTS

Sixty-nine respondents from 40 unique medical centers completed the survey. Most practiced at academic medical centers (75.5%), with 66% having adult NGM providers at their institution. The majority transitioned patients at ages 18-19 years (44.1%) using patient interviews to assess readiness (61.8%), while only 2.9% used validated assessment tools. Most patients transferred to adult general gastroenterologists (76.5%) or adult NGM experts (64.7%). Infrastructure gaps were identified: 88.2% lacked transition coordinators, 91.3% had no formal transition teams, and no centers received financial support for transition services. Significant barriers reported were need for more adult NGM clinicians (60.3%) and patient hesitancy with transitioning care (58.3%). Respondents identified the greatest needs as more adult NGM clinicians, having dedicated transition coordinators, and formal transition protocols.

CONCLUSIONS

This first national survey of NGM transition practices reveals gaps in infrastructure, workforce, and standardized protocols. Addressing these deficiencies requires coordinated efforts between pediatric and adult NGM communities and healthcare institutions to establish evidence-based practices that ensure continuity of care for this vulnerable patient population.