Transition From Pediatric to Adult Healthcare for Colorectal Conditions: A Systematic Review

The Implicit Assumption

For decades, pediatric surgeons operated under an implicit model: patients with anorectal malformations and Hirschsprung disease would eventually find their way to adult providers when the time came 0:00. The transition was assumed to happen organically—families would seek adult care when pediatric clinics no longer felt appropriate, or pediatricians would refer patients out as they aged. This wasn't negligence; it reflected a reasonable belief that motivated families and competent primary care would bridge the gap. The focus remained on optimizing surgical outcomes in childhood, with less attention paid to the mechanics of handoff.

What the Evidence Revealed

A systematic review from Melbourne, Australia examined what actually happens during this transition 0:22. The findings were stark: eight studies addressed transition care for these conditions 0:28. The studies agreed that transitional care should start early in adolescence 0:30, but little evidence exists that transfer from pediatric to adult care is happening in a coordinated or timely fashion 0:30. More revealing still: no models of transition care were identified 0:40.

This is not a story of one approach being replaced by another 0:30 0:40. It is the documentation of an absence. The implicit model was never formalized, never tested, and—when finally examined—found to be largely non-functional 0:30. Patients with anorectal malformations and Hirschsprung disease need transfer from pediatric to adult providers to manage their colorectal conditions 0:00, but the infrastructure to accomplish this transfer does not exist in any systematic way 0:30 0:40.

Where Practice Stands

The current state is one of recognition without solution 0:30 0:40. The Melbourne review establishes that the problem is real and the gap is wide, but offers no tested framework to close it 0:40. More work is needed to ensure children with anorectal malformations and Hirschsprung disease continue to receive optimal care as they grow older 0:43.

What this means in practice: most patients still experience transition as an unstructured event rather than a planned process 0:30. Some are lost to follow-up entirely. Others present to adult emergency departments with complications that might have been prevented by continuous subspecialty care. A subset—typically those with the most engaged families and the most severe disease—manage to establish care with adult colorectal surgeons, but they do so by navigating the system themselves rather than being guided through it 0:30.

What Remains Unsettled

Nearly everything. The Melbourne review documents the problem but leaves the operational questions unanswered 0:30 0:40 0:43. When should transition begin? The studies agree on early adolescence 0:30, but that spans years—does preparation start in early teens, mid-teens, or later? What does preparation consist of 0:30? Who owns the transition—pediatric surgery, adult colorectal surgery, primary care, or some combination? Should there be a dedicated transition clinic, or can this be accomplished within existing structures?

More fundamentally: what does successful transition look like for these patients 0:30 0:43? Is the goal simply to establish care with an adult provider, or does success require that the adult provider have specific expertise in congenital colorectal conditions? Many adult colorectal surgeons have limited experience with anorectal malformations and Hirschsprung disease, as these are rare conditions typically managed in childhood. If subspecialty expertise is required, the pool of available adult providers shrinks considerably, and the logistics of transition become more complex.

The absence of identified models 0:40 means there are no tested approaches to evaluate, refine, or adopt. Every center attempting to formalize transition care is starting from scratch 0:40. Whether a structured transition program improves long-term outcomes—reduces emergency presentations, maintains functional status, preserves quality of life—remains unknown. The Melbourne review establishes that the current approach is inadequate 0:30, but the path forward is entirely open 0:40 0:43.

The consensus without the infrastructure

For decades, pediatric surgeons have understood that children born with anorectal malformations and Hirschsprung disease require lifelong management 0:00. The conditions themselves resolve surgically in infancy, but their sequelae — fecal incontinence, constipation, sexual dysfunction, psychosocial burden — persist into adulthood and often worsen with age 0:00. The intellectual consensus formed early: these patients need structured transition from pediatric to adult providers 0:30. What has not followed is the practice 0:30.

A systematic review from Melbourne identified only eight studies addressing transition care for these conditions 0:28. The studies converged on a single recommendation: transitional care should start early in adolescence 0:30. That agreement, however, masks a more troubling finding. The review found little evidence that transfer from pediatric to adult care is happening in a coordinated or timely fashion 0:30. More striking still, the authors identified no models of transition care 0:40. Not unsuccessful models. Not models requiring refinement. No models at all.

Why the gap persists

The absence is not for lack of awareness 0:43. Pediatric colorectal surgeons know their patients age out 0:00. Adult colorectal surgeons know these patients exist 0:00. The barrier appears structural rather than cognitive 0:30 0:40. The result is a care desert in early adulthood, precisely when patients are navigating independence, sexuality, and employment — all domains where bowel dysfunction exacts its highest cost 0:00.

The problem compounds 0:30. Without structured handoff, patients lose continuity 0:30. Some drift away from care entirely 0:30. Some return to pediatric surgery clinics well into adulthood, having found no alternative 0:00.

What remains unsettled

Nearly everything. The Melbourne review makes clear that the field has not progressed beyond recognizing the problem 0:43. No one has answered when transition should occur — early adolescence is a span of years, and the optimal timing likely varies by functional status, psychosocial maturity, and local resources 0:30. No one has defined what a transition program should contain 0:40. No one has determined who should lead transition — pediatric surgery, adult colorectal surgery, gastroenterology, or a multidisciplinary team 0:40.

The evidence gap extends to outcomes 0:28 0:40. Without models, there are no data on whether structured transition improves bowel function, quality of life, or healthcare utilization compared to ad hoc transfer 0:40. There is no consensus on what constitutes successful transition — is it simply establishing care with an adult provider, or does it require demonstrated patient knowledge, self-management skills, and functional stability 0:40.

Most fundamentally, the field has not resolved the workforce question 0:40 0:43. Building the infrastructure to support these patients in adulthood requires institutional commitment and resources that do not yet exist at scale 0:40. In the absence of such infrastructure, even well-designed transition programs have nowhere to send patients 0:30 0:40.

The Melbourne review documents a field stuck in the declarative phase: we agree this matters, we agree it should happen early, we agree it is not happening 0:30 0:30 0:43. The imperative now is operational 0:43. Someone must build the first model, measure it, publish it, and let others refine it 0:40. Until then, the patients who survived infancy because of surgical innovation will continue to lose care in young adulthood because of systems neglect 0:00 0:30.