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

• Published in: Archives of disease in childhood 2021-12, Vol.106 (12), p.1202-1206
• Main Authors: Lodh, Rajib, Amin, Sam, Ammar, Amr, Bellis, Lucy, Brink, Phillip, Calisto, Amedeo, Crimmins, Darach, Eunson, Paul, Forsyth, Rob J, Goodden, John, Kaminska, Margaret, Kehoe, Joanne, Kirkpatrick, Martin, Kumar, Ram, Leonard, Jane, Lording, Alice, Martin, Katherine, Miller, Russell, Mordekar, Santosh R, Pettorini, Benedetta, Smith, Martin, Smith, Rachel, Sneade, Christine, Whitney, Andrea, Vloeberghs, Michael, Zaki, Hesham, Lumsden, Daniel E
• Format: Article
• Language: English
• Subjects: Adolescent; Age; Baclofen; Baclofen - administration & dosage; Baclofen - therapeutic use; Botulinum toxin; Brain; Brain research; Catheters; Cerebral palsy; Cerebral Palsy - diagnosis; Cerebral Palsy - drug therapy; Child; Child, Preschool; Childhood; Children; Classification; Cross-Sectional Studies; Dosage; Dystonia; Families & family life; Humans; Injections, Spinal; Ireland; Male; Muscle Hypertonia - drug therapy; Muscle Relaxants, Central - administration & dosage; Muscle Relaxants, Central - therapeutic use; Muscle Spasticity - drug therapy; Neurology; Neurosurgery; Oral administration; Original research; Paralysis; Patients; Pediatrics; Physical Disabilities; Pumps; Quality of life; Referral; Rehabilitation; Spasticity; Spinal cord injuries; Surveys and Questionnaires; Treatment Outcome; United Kingdom; Young Adults
• ISSN: 0003-9888; 1468-2044
• DOI: 10.1136/archdischild-2020-321487

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.