Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey

Rajib Lodh; Sam Amin; Amr Ammar; Lucy Bellis; Phillip Brink; Amedeo Calisto; Darach Crimmins; Paul Eunson; Rob J. Forsyth; John Goodden; Margaret Kaminska; Joanne Kehoe; Martin Kirkpatrick; Ram Kumar; Jane Leonard; Alice Lording; Katherine Martin; Russell Miller; Santosh R. Mordekar; Benedetta Pettorini; Martin Smith; Rachel Smith; Christine Sneade; Andrea Whitney; Michael Vloeberghs; Hesham Zaki; Daniel E. Lumsden

doi:10.1136/archdischild-2020-321487

Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey

Rajib Lodh (Lead / Corresponding author), Sam Amin, Amr Ammar, Lucy Bellis, Phillip Brink, Amedeo Calisto, Darach Crimmins, Paul Eunson, Rob J. Forsyth, John Goodden, Margaret Kaminska, Joanne Kehoe, Martin Kirkpatrick, Ram Kumar, Jane Leonard, Alice Lording, Katherine Martin, Russell Miller, Santosh R. Mordekar, Benedetta PettoriniMartin Smith, Rachel Smith, Christine Sneade, Andrea Whitney, Michael Vloeberghs, Hesham Zaki, Daniel E. Lumsden

Research output: Contribution to journal › Article › peer-review

5 Citations (Scopus)

Abstract

Background: Intrathecal baclofen (ITB) is a useful treatment for hypertonia where non-invasive treatments have been ineffective or poorly tolerated. There is an absence of national guidance on selection criteria and a lack of literature regarding patient characteristics and treatment details for children and young people (CYP) receiving ITB therapy in the UK and Ireland. We aimed to gather patient and treatment characteristics for CYP receiving ITB in the UK and Ireland.

Methods: An electronic survey was sent to all paediatric ITB centres in the UK and Ireland. Anonymised data were returned between December 2019 and April 2020. CYP >16 years and those awaiting ITB pump removal were excluded from the dataset.

Results: 176 CYP were identified as receiving ITB therapy across the UK and Ireland. The majority of CYP with ITB pumps were non-ambulant (93%) with a diagnosis of cerebral palsy (79%). Median age of ITB insertion was 9 years; median current age was 14 years. 79% of CYP had significant spasticity, 55% had significant dystonia. The most commonly used ITB dosing modes were continuous (73%) and flexible (23%).

Conclusions: ITB pumps were most frequently used for non-ambulant CYP with cerebral palsy and existence of spasticity and/or dystonia in the UK and Ireland. Most CYP were receiving a continuous dose of ITB. There is significant variation in the number of paediatric ITB pumps across UK and Ireland. There is a need for development of nationally accepted paediatric referral criteria and clinical standards for ITB use.

Original language	English
Pages (from-to)	1202-1206
Number of pages	5
Journal	Archives of Disease in Childhood
Volume	106
Issue number	12
Early online date	14 Apr 2021
DOIs	https://doi.org/10.1136/archdischild-2020-321487
Publication status	Published - 1 Dec 2021

Keywords

Neurology
Neurosurgery
Rehabilitation

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health

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10.1136/archdischild-2020-321487

Cite this

Lodh, R., Amin, S., Ammar, A., Bellis, L., Brink, P., Calisto, A., Crimmins, D., Eunson, P., Forsyth, R. J., Goodden, J., Kaminska, M., Kehoe, J., Kirkpatrick, M., Kumar, R., Leonard, J., Lording, A., Martin, K., Miller, R., Mordekar, S. R., ... Lumsden, D. E. (2021). Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey. Archives of Disease in Childhood, 106(12), 1202-1206. https://doi.org/10.1136/archdischild-2020-321487

@article{9a7dce189c774de095b08ba2732060e6,

title = "Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey",

abstract = "Background: Intrathecal baclofen (ITB) is a useful treatment for hypertonia where non-invasive treatments have been ineffective or poorly tolerated. There is an absence of national guidance on selection criteria and a lack of literature regarding patient characteristics and treatment details for children and young people (CYP) receiving ITB therapy in the UK and Ireland. We aimed to gather patient and treatment characteristics for CYP receiving ITB in the UK and Ireland.Methods: An electronic survey was sent to all paediatric ITB centres in the UK and Ireland. Anonymised data were returned between December 2019 and April 2020. CYP >16 years and those awaiting ITB pump removal were excluded from the dataset.Results: 176 CYP were identified as receiving ITB therapy across the UK and Ireland. The majority of CYP with ITB pumps were non-ambulant (93%) with a diagnosis of cerebral palsy (79%). Median age of ITB insertion was 9 years; median current age was 14 years. 79% of CYP had significant spasticity, 55% had significant dystonia. The most commonly used ITB dosing modes were continuous (73%) and flexible (23%).Conclusions: ITB pumps were most frequently used for non-ambulant CYP with cerebral palsy and existence of spasticity and/or dystonia in the UK and Ireland. Most CYP were receiving a continuous dose of ITB. There is significant variation in the number of paediatric ITB pumps across UK and Ireland. There is a need for development of nationally accepted paediatric referral criteria and clinical standards for ITB use.",

keywords = "Neurology, Neurosurgery, Rehabilitation",

author = "Rajib Lodh and Sam Amin and Amr Ammar and Lucy Bellis and Phillip Brink and Amedeo Calisto and Darach Crimmins and Paul Eunson and Forsyth, {Rob J.} and John Goodden and Margaret Kaminska and Joanne Kehoe and Martin Kirkpatrick and Ram Kumar and Jane Leonard and Alice Lording and Katherine Martin and Russell Miller and Mordekar, {Santosh R.} and Benedetta Pettorini and Martin Smith and Rachel Smith and Christine Sneade and Andrea Whitney and Michael Vloeberghs and Hesham Zaki and Lumsden, {Daniel E.}",

note = "{\textcopyright} Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.",

year = "2021",

month = dec,

day = "1",

doi = "10.1136/archdischild-2020-321487",

language = "English",

volume = "106",

pages = "1202--1206",

journal = "Archives of Disease in Childhood",

issn = "0003-9888",

publisher = "BMJ Publishing Group",

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Lodh, R, Amin, S, Ammar, A, Bellis, L, Brink, P, Calisto, A, Crimmins, D, Eunson, P, Forsyth, RJ, Goodden, J, Kaminska, M, Kehoe, J, Kirkpatrick, M, Kumar, R, Leonard, J, Lording, A, Martin, K, Miller, R, Mordekar, SR, Pettorini, B, Smith, M, Smith, R, Sneade, C, Whitney, A, Vloeberghs, M, Zaki, H & Lumsden, DE 2021, 'Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey', Archives of Disease in Childhood, vol. 106, no. 12, pp. 1202-1206. https://doi.org/10.1136/archdischild-2020-321487

TY - JOUR

T1 - Intrathecal baclofen pumps in the management of hypertonia in childhood

T2 - a UK and Ireland wide survey

AU - Lodh, Rajib

AU - Amin, Sam

AU - Ammar, Amr

AU - Bellis, Lucy

AU - Brink, Phillip

AU - Calisto, Amedeo

AU - Crimmins, Darach

AU - Eunson, Paul

AU - Forsyth, Rob J.

AU - Goodden, John

AU - Kaminska, Margaret

AU - Kehoe, Joanne

AU - Kirkpatrick, Martin

AU - Kumar, Ram

AU - Leonard, Jane

AU - Lording, Alice

AU - Martin, Katherine

AU - Miller, Russell

AU - Mordekar, Santosh R.

AU - Pettorini, Benedetta

AU - Smith, Martin

AU - Smith, Rachel

AU - Sneade, Christine

AU - Whitney, Andrea

AU - Vloeberghs, Michael

AU - Zaki, Hesham

AU - Lumsden, Daniel E.

PY - 2021/12/1

Y1 - 2021/12/1

N2 - Background: Intrathecal baclofen (ITB) is a useful treatment for hypertonia where non-invasive treatments have been ineffective or poorly tolerated. There is an absence of national guidance on selection criteria and a lack of literature regarding patient characteristics and treatment details for children and young people (CYP) receiving ITB therapy in the UK and Ireland. We aimed to gather patient and treatment characteristics for CYP receiving ITB in the UK and Ireland.Methods: An electronic survey was sent to all paediatric ITB centres in the UK and Ireland. Anonymised data were returned between December 2019 and April 2020. CYP >16 years and those awaiting ITB pump removal were excluded from the dataset.Results: 176 CYP were identified as receiving ITB therapy across the UK and Ireland. The majority of CYP with ITB pumps were non-ambulant (93%) with a diagnosis of cerebral palsy (79%). Median age of ITB insertion was 9 years; median current age was 14 years. 79% of CYP had significant spasticity, 55% had significant dystonia. The most commonly used ITB dosing modes were continuous (73%) and flexible (23%).Conclusions: ITB pumps were most frequently used for non-ambulant CYP with cerebral palsy and existence of spasticity and/or dystonia in the UK and Ireland. Most CYP were receiving a continuous dose of ITB. There is significant variation in the number of paediatric ITB pumps across UK and Ireland. There is a need for development of nationally accepted paediatric referral criteria and clinical standards for ITB use.

AB - Background: Intrathecal baclofen (ITB) is a useful treatment for hypertonia where non-invasive treatments have been ineffective or poorly tolerated. There is an absence of national guidance on selection criteria and a lack of literature regarding patient characteristics and treatment details for children and young people (CYP) receiving ITB therapy in the UK and Ireland. We aimed to gather patient and treatment characteristics for CYP receiving ITB in the UK and Ireland.Methods: An electronic survey was sent to all paediatric ITB centres in the UK and Ireland. Anonymised data were returned between December 2019 and April 2020. CYP >16 years and those awaiting ITB pump removal were excluded from the dataset.Results: 176 CYP were identified as receiving ITB therapy across the UK and Ireland. The majority of CYP with ITB pumps were non-ambulant (93%) with a diagnosis of cerebral palsy (79%). Median age of ITB insertion was 9 years; median current age was 14 years. 79% of CYP had significant spasticity, 55% had significant dystonia. The most commonly used ITB dosing modes were continuous (73%) and flexible (23%).Conclusions: ITB pumps were most frequently used for non-ambulant CYP with cerebral palsy and existence of spasticity and/or dystonia in the UK and Ireland. Most CYP were receiving a continuous dose of ITB. There is significant variation in the number of paediatric ITB pumps across UK and Ireland. There is a need for development of nationally accepted paediatric referral criteria and clinical standards for ITB use.

KW - Neurology

KW - Neurosurgery

KW - Rehabilitation

UR - http://www.scopus.com/inward/record.url?scp=85104561024&partnerID=8YFLogxK

U2 - 10.1136/archdischild-2020-321487

DO - 10.1136/archdischild-2020-321487

M3 - Article

C2 - 33853760

SN - 0003-9888

VL - 106

SP - 1202

EP - 1206

JO - Archives of Disease in Childhood

JF - Archives of Disease in Childhood

IS - 12

ER -

Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey

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