Long term follow-up and transition of care in anorectal malformations: An international survey.
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.
Department of Pediatric and Neonatal Surgery, St. George's University Hospitals NHS Foundation Trust, Blackshaw Rd, SW17 0QT London, United Kingdom. Electronic address: stefano.giuliani@nhs.net.
Stefano
S
Giuliani
Department of Pediatric and Neonatal Surgery, St. George's University Hospitals NHS Foundation Trust, Blackshaw Rd, SW17 0QT London, United Kingdom.
Emily
E
Decker
Department of Pediatric Surgery, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Via Francesco Sforza 35, 20122 Milan, Italy.
Ernesto
E
Leva
Department of Pediatric Surgery, Buzzi Children's Hospital, Via Lodovico Castelvetro 32, 20154 Milan, Italy.
Giovanna
G
Riccipetitoni
Department of Medical and Surgical Neonatology, Bambino Gesu' Research Children's Hospital, Piazza Sant'Onofrio 4, 00165 Rome, Italy.
Pietro
P
Bagolan
D000293:Adolescent; D000359:Aftercare / Q000379:methods* / Q000706:statistics & numerical data; D000071056:Anorectal Malformations / Q000150:complications / Q000523:psychology / Q000628:therapy*; D002648:Child; D002675:Child, Preschool; D032921:Consensus; D014943:Global Health; D019538:Health Care Surveys; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data*; D060305:Transition to Adult Care / Q000706:statistics & numerical data
Anorectal malformation; Children; Follow-up; Long term outcomes; Teenagers; Transition of care