1. Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey
- Author
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Amr Ammar, Sam Amin, Michael Vloeberghs, Katherine Martin, Alice Lording, Rajib Lodh, Rachel B. Smith, Martin Smith, Jane Leonard, Rob Forsyth, Santosh R. Mordekar, Darach Crimmins, Lucy Bellis, Benedetta Pettorini, Christine Sneade, Hesham Zaki, Margaret Kaminska, Andrea Whitney, Paul Eunson, John Goodden, Ram Kumar, Martin Kirkpatrick, Phillip Brink, Joanne Kehoe, Amedeo Calisto, Russell Miller, and Daniel E. Lumsden
- Subjects
Male ,Baclofen ,Pediatrics ,medicine.medical_specialty ,Adolescent ,Referral ,medicine.medical_treatment ,Cerebral palsy ,03 medical and health sciences ,0302 clinical medicine ,Surveys and Questionnaires ,030225 pediatrics ,Muscle Hypertonia ,medicine ,Humans ,Spasticity ,Dosing ,Child ,Injections, Spinal ,Dystonia ,Rehabilitation ,Muscle Relaxants, Central ,business.industry ,Cerebral Palsy ,medicine.disease ,United Kingdom ,Cross-Sectional Studies ,Treatment Outcome ,Muscle Spasticity ,Child, Preschool ,Pediatrics, Perinatology and Child Health ,Hypertonia ,Neurosurgery ,medicine.symptom ,business ,Ireland ,030217 neurology & neurosurgery - Abstract
BackgroundIntrathecal 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.MethodsAn 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.Results176 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%).ConclusionsITB 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.
- Published
- 2021