The long-term follow-up outcomes and transition rates across seven representative pediatric congenital surgical conditions: disease severity drives follow-up retention.

PURPOSE: Patients with congenital surgical conditions require lifelong follow-up. However, the transition from pediatric to adult care remains poorly established. This study aimed to evaluate the long-term follow-up outcomes and transition rates of seven pediatric congenital surgical conditions.

METHODS

This single-institution retrospective study included 337 patients born before 2008 who underwent surgery for esophageal atresia/tracheoesophageal fistula (TEF-EA, n = 30), choledochal cyst (CC, n = 53), biliary atresia (BA, n = 62), Hirschsprung's disease (HD, n = 60), high/intermediate anorectal malformation (ARM, n = 56), low ARM (n = 69), and cloacal malformation (Cloaca, n = 7). Follow-up outcomes and transition status were assessed.

RESULTS

Overall, 146 patients (43%) were lost to the follow-up, and only 10 (3%) achieved formal transition. The lost to follow-up rates were highest in High/Int ARM (61%), HD (55%), and Low ARM (54%), with median last visit ages of 15.0, 5.5, and 7.6 years. Conversely, BA (21%) and cloacal (0%) anomalies demonstrated low attrition despite early surgical ages, suggesting that disease severity drives follow-up retention. One patient with Cloaca who disengaged from follow-up died from a urinary tract infection at 35 years old.

CONCLUSION

Follow-up attrition was paradoxically the highest among patients with favorable postoperative outcomes. Targeted transition programs focusing on ARM and HD populations are urgently needed.