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 journalArticle

Abstract

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)1450-7
Number of pages8
JournalJournal of Pediatric Surgery
Volume51
Issue number9
DOIs
Publication statusPublished - Sep 2016

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Patient Transfer
Aftercare
Consensus
Parents
Surveys and Questionnaires
Anorectal Malformations

Keywords

  • Journal Article

Cite this

Long term follow-up and transition of care in anorectal malformations : An international survey. / Giuliani, Stefano; Decker, Emily; Leva, Ernesto; Riccipetitoni, Giovanna; Bagolan, Pietro.

In: Journal of Pediatric Surgery, Vol. 51, No. 9, 09.2016, p. 1450-7.

Research output: Contribution to journalArticle

Giuliani, Stefano ; Decker, Emily ; Leva, Ernesto ; Riccipetitoni, Giovanna ; Bagolan, Pietro. / Long term follow-up and transition of care in anorectal malformations : An international survey. In: Journal of Pediatric Surgery. 2016 ; Vol. 51, No. 9. pp. 1450-7.
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abstract = "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.",
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T1 - Long term follow-up and transition of care in anorectal malformations

T2 - An international survey

AU - Giuliani, Stefano

AU - Decker, Emily

AU - Leva, Ernesto

AU - Riccipetitoni, Giovanna

AU - Bagolan, Pietro

N1 - Copyright © 2016 Elsevier Inc. All rights reserved.

PY - 2016/9

Y1 - 2016/9

N2 - 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.

AB - 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.

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