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Lookup NU author(s): Dr Rob ForsythORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.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.
Author(s): 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
Publication type: Article
Publication status: Published
Journal: Archives of Disease in Childhood
Year: 2021
Volume: 106
Issue: 12
Pages: 1202-1206
Print publication date: 19/11/2021
Online publication date: 14/04/2021
Acceptance date: 13/03/2021
Date deposited: 18/03/2021
ISSN (print): 0003-9888
ISSN (electronic): 1468-2044
Publisher: BMJ Publishing Group
URL: https://doi.org/10.1136/archdischild-2020-321487
DOI: 10.1136/archdischild-2020-321487
PubMed id: 33853760
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