Pediatric Congenital Conditions Face Major Follow-Up Gaps

LONG-TERM follow-up frequently lapses among patients with pediatric congenital conditions, particularly after favorable surgical outcomes overall.

A retrospective study of 337 patients found that 43% were lost to follow-up after surgery for one of seven congenital conditions. Only 10 patients, representing 3% of the cohort, completed a formal transition from pediatric to adult care.

The findings indicate that patients who appear to be doing well after surgery may be especially vulnerable to leaving specialist care, despite the lifelong monitoring needs associated with congenital surgical conditions.

Follow-Up Varies Across Pediatric Congenital Conditions

The single-center study included patients born before 2008 who underwent surgery for esophageal atresia or tracheoesophageal fistula, choledochal cyst, biliary atresia, Hirschsprung disease, anorectal malformation, or cloacal malformation.

Follow-up loss was greatest among patients with high or intermediate anorectal malformations, affecting 61% of this group. Attrition reached 55% among those with Hirschsprung disease and 54% among patients with low anorectal malformations.

The median age at the last recorded visit also differed substantially. Patients with high or intermediate anorectal malformations were last seen at a median age of 15 years, compared with 7.6 years for low anorectal malformations and just 5.5 years for Hirschsprung disease.

These patterns suggest that many patients disengage from specialist services well before reaching the usual point of transition to adult care.

Disease Severity May Support Follow-Up Retention

Patients with more severe conditions were more likely to remain under follow-up. Attrition was 21% among those with biliary atresia, while none of the seven patients with cloacal malformation were classified as lost to follow-up.

This contrast was evident despite both groups undergoing surgery at young ages, supporting the researchers’ conclusion that perceived disease severity may influence continued engagement with care.

The potential consequences of attrition were underscored by one patient with cloacal malformation who disengaged from follow-up and later died from a urinary tract infection at 35 years of age.

Structured Transition Programs Are Needed

The study highlights a substantial gap between long-term follow-up and formal transition to adult care. The researchers identified patients with anorectal malformations and Hirschsprung disease as priority populations for targeted transition programs.

For clinicians, the results suggest that favorable postoperative progress should not be interpreted as eliminating future care needs. Earlier transition planning, clear transfer pathways, and active follow-up may help prevent patients with pediatric congenital conditions from disappearing from care during childhood or adolescence.

Reference
Tabata Y et al. The long-term follow-up outcomes and transition rates across seven representative pediatric congenital surgical conditions: disease severity drives follow-up retention. Pediatr Surg Int. 2026;42:411.

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