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 journalArticlepeer-review

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 languageEnglish
Number of pages5
JournalArchives of Disease in Childhood
Early online date14 Apr 2021
DOIs
Publication statusE-pub ahead of print - 14 Apr 2021

Keywords

  • Neurology
  • Neurosurgery
  • Rehabilitation

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