Tethered cord in patients affected by anorectal malformations: a survey from the ARM-Net Consortium

María Fanjul, I. Samuk, P. Bagolan, Ernesto Leva, C. Sloots, C. Giné, Dalia Aminoff, Paola Midrio, Dalia Aminoff, Piero Bagolan, Ivo De Blaauw, Stefan Deluggi, María Fanjul, Francesco Fascetti Leon, Araceli García, Carles Giné, Stefano Giuliani, Caterina Grano, Sabine Grasshoff-Derr, Michel HaanenStephan Holland-Cunz, Ekkehart Jenetzky, Martin Lacher, Ernesto Leva, Grabiele Lisi, Igor Makedonsky, Carlos Marcelis, Paola Midrio, Marc Miserez, Onur Ozen, Ferda Percin, Heiko Reutter, Stephan Rohleder, Inbal Samuk, Eberhard Schmiedeke, Nicole Schwarzer, Pim Sloots, Pernilla Stenström, Holger Till, Lideke Van der Steeg, Iris Van Rooij, Patrick Volk, Tomas Wester, Nadine Zwink, On behalf of the ARM-Net Consortium

Research output: Contribution to journalArticle

Abstract

Purpose: The goal of this study was to determine the degree of consensus in the management of spinal cord tethering (TC) in patients with anorectal malformation (ARM) in a large cohort of European pediatric centers. Methods: A survey was sent to pediatric surgeons (one per center) members of the ARM-Net Consortium. Results: Twenty-four (86%) from ten different countries completed the survey. Overall prevalence of TC was: 21% unknown, 46% below 15, and 29% between 15 and 30%. Ninety-six agreed on screening all patients for TC regardless the type of ARM and 79% start screening at birth. Responses varied in TC definition and diagnostic tools. Fifty percent of respondents prefer ultrasound (US), 21% indicate either US or magnetic resonance (MRI) based on a pre-defined risk of presenting TC, and 21% perform both. Discrepancy exists in complementary test: 82% carry out urodynamic studies (UDS) and only 37% perform somatosensory-evoked potentials (SSEP). Prophylactic untethering is performed in only two centers (8%). Conclusions: Survey results support TC screening in all patients with ARM and conservative management of TC. There is discrepancy in the definition of TC, screening tools, and complementary test. Protocols should be developed to avoid such variability in management.

Original languageEnglish
Pages (from-to)849-854
Number of pages6
JournalPediatric Surgery International
Volume33
Issue number8
DOIs
Publication statusPublished - Aug 1 2017

Fingerprint

Pediatrics
Somatosensory Evoked Potentials
Urodynamics
Spinal Cord
Magnetic Resonance Spectroscopy
Parturition
Surveys and Questionnaires
Anorectal Malformations
Conservative Treatment
Surgeons

Keywords

  • Anorectal malformation
  • Arm-Net Consortium
  • Neurosurgery
  • Tethered cord

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Surgery

Cite this

Tethered cord in patients affected by anorectal malformations : a survey from the ARM-Net Consortium. / Fanjul, María; Samuk, I.; Bagolan, P.; Leva, Ernesto; Sloots, C.; Giné, C.; Aminoff, Dalia; Midrio, Paola; Aminoff, Dalia; Bagolan, Piero; De Blaauw, Ivo; Deluggi, Stefan; Fanjul, María; Fascetti Leon, Francesco; García, Araceli; Giné, Carles; Giuliani, Stefano; Grano, Caterina; Grasshoff-Derr, Sabine; Haanen, Michel; Holland-Cunz, Stephan; Jenetzky, Ekkehart; Lacher, Martin; Leva, Ernesto; Lisi, Grabiele; Makedonsky, Igor; Marcelis, Carlos; Midrio, Paola; Miserez, Marc; Ozen, Onur; Percin, Ferda; Reutter, Heiko; Rohleder, Stephan; Samuk, Inbal; Schmiedeke, Eberhard; Schwarzer, Nicole; Sloots, Pim; Stenström, Pernilla; Till, Holger; Van der Steeg, Lideke; Van Rooij, Iris; Volk, Patrick; Wester, Tomas; Zwink, Nadine; On behalf of the ARM-Net Consortium.

In: Pediatric Surgery International, Vol. 33, No. 8, 01.08.2017, p. 849-854.

Research output: Contribution to journalArticle

Fanjul, M, Samuk, I, Bagolan, P, Leva, E, Sloots, C, Giné, C, Aminoff, D, Midrio, P, Aminoff, D, Bagolan, P, De Blaauw, I, Deluggi, S, Fanjul, M, Fascetti Leon, F, García, A, Giné, C, Giuliani, S, Grano, C, Grasshoff-Derr, S, Haanen, M, Holland-Cunz, S, Jenetzky, E, Lacher, M, Leva, E, Lisi, G, Makedonsky, I, Marcelis, C, Midrio, P, Miserez, M, Ozen, O, Percin, F, Reutter, H, Rohleder, S, Samuk, I, Schmiedeke, E, Schwarzer, N, Sloots, P, Stenström, P, Till, H, Van der Steeg, L, Van Rooij, I, Volk, P, Wester, T, Zwink, N & On behalf of the ARM-Net Consortium 2017, 'Tethered cord in patients affected by anorectal malformations: a survey from the ARM-Net Consortium', Pediatric Surgery International, vol. 33, no. 8, pp. 849-854. https://doi.org/10.1007/s00383-017-4105-4
Fanjul, María ; Samuk, I. ; Bagolan, P. ; Leva, Ernesto ; Sloots, C. ; Giné, C. ; Aminoff, Dalia ; Midrio, Paola ; Aminoff, Dalia ; Bagolan, Piero ; De Blaauw, Ivo ; Deluggi, Stefan ; Fanjul, María ; Fascetti Leon, Francesco ; García, Araceli ; Giné, Carles ; Giuliani, Stefano ; Grano, Caterina ; Grasshoff-Derr, Sabine ; Haanen, Michel ; Holland-Cunz, Stephan ; Jenetzky, Ekkehart ; Lacher, Martin ; Leva, Ernesto ; Lisi, Grabiele ; Makedonsky, Igor ; Marcelis, Carlos ; Midrio, Paola ; Miserez, Marc ; Ozen, Onur ; Percin, Ferda ; Reutter, Heiko ; Rohleder, Stephan ; Samuk, Inbal ; Schmiedeke, Eberhard ; Schwarzer, Nicole ; Sloots, Pim ; Stenström, Pernilla ; Till, Holger ; Van der Steeg, Lideke ; Van Rooij, Iris ; Volk, Patrick ; Wester, Tomas ; Zwink, Nadine ; On behalf of the ARM-Net Consortium. / Tethered cord in patients affected by anorectal malformations : a survey from the ARM-Net Consortium. In: Pediatric Surgery International. 2017 ; Vol. 33, No. 8. pp. 849-854.
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abstract = "Purpose: The goal of this study was to determine the degree of consensus in the management of spinal cord tethering (TC) in patients with anorectal malformation (ARM) in a large cohort of European pediatric centers. Methods: A survey was sent to pediatric surgeons (one per center) members of the ARM-Net Consortium. Results: Twenty-four (86{\%}) from ten different countries completed the survey. Overall prevalence of TC was: 21{\%} unknown, 46{\%} below 15, and 29{\%} between 15 and 30{\%}. Ninety-six agreed on screening all patients for TC regardless the type of ARM and 79{\%} start screening at birth. Responses varied in TC definition and diagnostic tools. Fifty percent of respondents prefer ultrasound (US), 21{\%} indicate either US or magnetic resonance (MRI) based on a pre-defined risk of presenting TC, and 21{\%} perform both. Discrepancy exists in complementary test: 82{\%} carry out urodynamic studies (UDS) and only 37{\%} perform somatosensory-evoked potentials (SSEP). Prophylactic untethering is performed in only two centers (8{\%}). Conclusions: Survey results support TC screening in all patients with ARM and conservative management of TC. There is discrepancy in the definition of TC, screening tools, and complementary test. Protocols should be developed to avoid such variability in management.",
keywords = "Anorectal malformation, Arm-Net Consortium, Neurosurgery, Tethered cord",
author = "Mar{\'i}a Fanjul and I. Samuk and P. Bagolan and Ernesto Leva and C. Sloots and C. Gin{\'e} and Dalia Aminoff and Paola Midrio and Dalia Aminoff and Piero Bagolan and {De Blaauw}, Ivo and Stefan Deluggi and Mar{\'i}a Fanjul and {Fascetti Leon}, Francesco and Araceli Garc{\'i}a and Carles Gin{\'e} and Stefano Giuliani and Caterina Grano and Sabine Grasshoff-Derr and Michel Haanen and Stephan Holland-Cunz and Ekkehart Jenetzky and Martin Lacher and Ernesto Leva and Grabiele Lisi and Igor Makedonsky and Carlos Marcelis and Paola Midrio and Marc Miserez and Onur Ozen and Ferda Percin and Heiko Reutter and Stephan Rohleder and Inbal Samuk and Eberhard Schmiedeke and Nicole Schwarzer and Pim Sloots and Pernilla Stenstr{\"o}m and Holger Till and {Van der Steeg}, Lideke and {Van Rooij}, Iris and Patrick Volk and Tomas Wester and Nadine Zwink and {On behalf of the ARM-Net Consortium}",
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T1 - Tethered cord in patients affected by anorectal malformations

T2 - a survey from the ARM-Net Consortium

AU - Fanjul, María

AU - Samuk, I.

AU - Bagolan, P.

AU - Leva, Ernesto

AU - Sloots, C.

AU - Giné, C.

AU - Aminoff, Dalia

AU - Midrio, Paola

AU - Aminoff, Dalia

AU - Bagolan, Piero

AU - De Blaauw, Ivo

AU - Deluggi, Stefan

AU - Fanjul, María

AU - Fascetti Leon, Francesco

AU - García, Araceli

AU - Giné, Carles

AU - Giuliani, Stefano

AU - Grano, Caterina

AU - Grasshoff-Derr, Sabine

AU - Haanen, Michel

AU - Holland-Cunz, Stephan

AU - Jenetzky, Ekkehart

AU - Lacher, Martin

AU - Leva, Ernesto

AU - Lisi, Grabiele

AU - Makedonsky, Igor

AU - Marcelis, Carlos

AU - Midrio, Paola

AU - Miserez, Marc

AU - Ozen, Onur

AU - Percin, Ferda

AU - Reutter, Heiko

AU - Rohleder, Stephan

AU - Samuk, Inbal

AU - Schmiedeke, Eberhard

AU - Schwarzer, Nicole

AU - Sloots, Pim

AU - Stenström, Pernilla

AU - Till, Holger

AU - Van der Steeg, Lideke

AU - Van Rooij, Iris

AU - Volk, Patrick

AU - Wester, Tomas

AU - Zwink, Nadine

AU - On behalf of the ARM-Net Consortium

PY - 2017/8/1

Y1 - 2017/8/1

N2 - Purpose: The goal of this study was to determine the degree of consensus in the management of spinal cord tethering (TC) in patients with anorectal malformation (ARM) in a large cohort of European pediatric centers. Methods: A survey was sent to pediatric surgeons (one per center) members of the ARM-Net Consortium. Results: Twenty-four (86%) from ten different countries completed the survey. Overall prevalence of TC was: 21% unknown, 46% below 15, and 29% between 15 and 30%. Ninety-six agreed on screening all patients for TC regardless the type of ARM and 79% start screening at birth. Responses varied in TC definition and diagnostic tools. Fifty percent of respondents prefer ultrasound (US), 21% indicate either US or magnetic resonance (MRI) based on a pre-defined risk of presenting TC, and 21% perform both. Discrepancy exists in complementary test: 82% carry out urodynamic studies (UDS) and only 37% perform somatosensory-evoked potentials (SSEP). Prophylactic untethering is performed in only two centers (8%). Conclusions: Survey results support TC screening in all patients with ARM and conservative management of TC. There is discrepancy in the definition of TC, screening tools, and complementary test. Protocols should be developed to avoid such variability in management.

AB - Purpose: The goal of this study was to determine the degree of consensus in the management of spinal cord tethering (TC) in patients with anorectal malformation (ARM) in a large cohort of European pediatric centers. Methods: A survey was sent to pediatric surgeons (one per center) members of the ARM-Net Consortium. Results: Twenty-four (86%) from ten different countries completed the survey. Overall prevalence of TC was: 21% unknown, 46% below 15, and 29% between 15 and 30%. Ninety-six agreed on screening all patients for TC regardless the type of ARM and 79% start screening at birth. Responses varied in TC definition and diagnostic tools. Fifty percent of respondents prefer ultrasound (US), 21% indicate either US or magnetic resonance (MRI) based on a pre-defined risk of presenting TC, and 21% perform both. Discrepancy exists in complementary test: 82% carry out urodynamic studies (UDS) and only 37% perform somatosensory-evoked potentials (SSEP). Prophylactic untethering is performed in only two centers (8%). Conclusions: Survey results support TC screening in all patients with ARM and conservative management of TC. There is discrepancy in the definition of TC, screening tools, and complementary test. Protocols should be developed to avoid such variability in management.

KW - Anorectal malformation

KW - Arm-Net Consortium

KW - Neurosurgery

KW - Tethered cord

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