The Problem
Patients with anorectal malformations and Hirschsprung disease face systematic barriers when transitioning from pediatric to adult care 0:06. These obstacles exist at multiple levels — patient knowledge, institutional protocols, and workforce capacity — and together they create gaps in continuity for young adults with lifelong colorectal conditions 0:06.
Three Core Barriers
Patient and family knowledge deficits. Patients and families lack education and knowledge about their colorectal conditions 0:30. Without understanding their anatomy, functional limitations, and long-term management needs, patients cannot advocate effectively for their care or recognize when they need specialist input 0:30.
Absence of structured transition protocols. There is a lack of transition protocols between pediatric and adult care services 0:30. Most institutions have no formal handoff process, leaving patients to navigate the transfer on their own or simply age out of pediatric clinics without established adult follow-up 0:30.
Adult workforce shortage. There is a shortage of adult colorectal clinicians trained to manage transition care for patients with congenital colorectal conditions 0:47. Adult surgeons and gastroenterologists typically have limited exposure to these congenital diagnoses during training, and few develop the expertise needed to manage the unique complications and functional issues these patients face 0:47.
What This Means for Trainees
If you are training in pediatric surgery, recognize that your surgical repair is the beginning of a lifelong care relationship, not the endpoint 0:06. Build patient education into every postoperative visit 0:30. If you are training in adult colorectal surgery, these patients will increasingly appear in your practice — consider seeking mentorship or additional training in congenital colorectal conditions 0:47.
The absence of transition infrastructure is not an unsolvable problem, but it requires deliberate institutional effort 0:30. Until those systems exist, individual clinicians must bridge the gap 0:06 0:30 0:47.
Takeaways from this story
- Patients with anorectal malformations and Hirschsprung disease face systematic barriers to transition care at multiple levels
- Lack of patient education about colorectal conditions undermines self-advocacy and recognition of when specialist care is needed
- Most institutions lack formal transition protocols, leaving patients to navigate the transfer from pediatric to adult care on their own
- Adult colorectal clinicians trained to manage congenital colorectal conditions are in short supply
