Long term follow-up and transition of care in anorectal malformations: An international survey

Stefano Giuliani, Emily Decker, Ernesto Leva, Giovanna Riccipetitoni, Pietro Bagolan

Research output: Contribution to journalArticlepeer-review


Background: The aim of the study was to assess current international practice in the long term follow-up, in managing active problems and transition of care for teenagers born with anorectal malformations (ARM). Methods: An original survey was administered to delegates attending two large colorectal surgical meetings in 2015. The 21 questions covered long term follow-up, specific issues for teenagers and transition of care. Results: 96/236 delegates completed the survey. Follow-up was routinely suspended before 10 year of age by 33% of respondents. 90% of them did not use a scoring system to assess or risks stratify patients, despite 81% stating that an objective score would be beneficial. 40% of respondents felt that >. 30% of their teenagers had ongoing active medical or psychosocial issues. 42% thought their patients were not ready to be transitioned. The process of transition should start around 13-16 years according to 54% of respondents. 72% had no protocol for transition and 82% did not hold multidisciplinary meetings with adult practitioners before transition. Conclusions: International consensus on the following aspects of the care in ARM is needed: structured long term follow-up, objective assessment and risk stratification scores, pathways of transition and methods to prepare patients, parents and adult practitioners.

Original languageEnglish
Pages (from-to)1450-1457
Number of pages8
JournalJournal of Pediatric Surgery
Issue number9
Publication statusPublished - 2016


  • Anorectal malformation
  • Children
  • Follow-up
  • Long term outcomes
  • Teenagers
  • Transition of care

ASJC Scopus subject areas

  • Surgery
  • Pediatrics, Perinatology, and Child Health

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