Yumiko Tabata, Toshio Harumatsu, Yudai Tsuruno, Ayaka Nagano, Koshiro Sugita, Nanako Nishida, Chihiro Kedoin, Masakazu Murakami, Keisuke Yano, Shun Onishi, Koji Yamada, Waka Yamada, Makoto Matsukubo, Ryuta Masuya, Takafumi Kawano, Tatsuru Kaji, Satoshi Ieiri
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.
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.