Transitional Care in Anorectal Malformation and Hirschsprung's Disease

The Problem

A UK systematic review of 234 studies identified consistent failures in transitioning pediatric colorectal patients—those with anorectal malformations and Hirschsprung disease—to adult surgical care 0:23. The analysis, presented by Cecilia Jigena from Cincinnati Children's Hospital, categorized three structural barriers and their corresponding solutions 0:10.

The Barriers

First, patients lack understanding of their own pathology 0:28. They reach adulthood without the knowledge base required to manage their condition independently or communicate effectively with new providers.

Second, adult surgeons lack education and awareness about pediatric colorectal pathologies 0:34. The conditions themselves are rare, and most adult colorectal surgeons trained without exposure to the long-term sequelae of childhood surgical repairs.

Third, no instructional transitional care program exists in most institutions 0:44. The handoff happens informally, if at all, with no structured protocol to ensure continuity.

The Proposed Solutions

The review proposed three interventions. First, foster young adult patients' autonomy 0:46—teach self-management skills explicitly rather than assuming they will develop organically. Second, conduct joint pediatric-adult transitional clinics 0:46, where both surgical teams see the patient together during the handoff period. Third, create a structured and coordinated transition program 0:46 with defined milestones, responsibilities, and documentation.

What This Means

For trainees in pediatric surgery: transition planning is part of the surgical care you provide, not an administrative afterthought. If your institution lacks a formal program, these patients are falling through gaps you can see and address.

For adult colorectal surgeons: these patients will arrive in your practice whether you trained for them or not. The joint clinic model offers a way to learn the pathology while assuming care, rather than inheriting complex patients cold.

The review does not report implementation outcomes or compare different transition models—it establishes that the problem is widespread and the solutions are conceptually agreed upon. The gap is execution.

The Problem

A UK systematic review of 234 studies identified three consistent barriers when patients with anorectal malformations or Hirschsprung disease transition from pediatric to adult surgical care 0:23. These are not isolated failures—they represent structural gaps across health systems.

The Three Challenges

First, patients lack understanding of their own anatomy and surgical history 0:28. Young adults often cannot explain what operation they had, what their anatomy is now, or what symptoms should prompt urgent evaluation 0:28. This knowledge gap becomes dangerous when they present to an emergency department or new provider 0:28.

Second, adult surgeons lack familiarity with pediatric colorectal pathologies 0:34. Most adult colorectal surgeons trained on acquired disease—cancer, inflammatory bowel disease, diverticulitis 0:34. They did not see pull-through procedures, posterior sagittal anorectoplasties, or the long-term sequelae of neonatal reconstruction 0:34. When a young adult with repaired imperforate anus presents with obstruction or incontinence, the adult surgeon may not know the relevant anatomy or failure modes 0:34.

Third, there is no structured transition program 0:44. Patients age out of pediatric care at an arbitrary birthday, often without formal handoff, without identifying an adult provider, and without a plan for ongoing surveillance 0:44.

Proposed Solutions

The review proposed three corresponding interventions 0:46 0:46 0:46. First, foster patient autonomy by teaching young adults to articulate their own history and recognize warning signs 0:46. Second, establish joint pediatric-adult transition clinics where both specialists see the patient together, allowing knowledge transfer and continuity 0:46. Third, create a structured, coordinated transition protocol—not just a referral, but a formal program with defined milestones and accountability 0:46.

What This Means

If you see a young adult with a history of neonatal bowel surgery, recognize that they may not understand their own anatomy and their prior surgeon may be unreachable 0:28. If your institution cares for these patients, the question is not whether transition is happening—it is whether it is happening by design or by accident 0:44.