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Lodh R, Amin S, Ammar A, et al. Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey. Arch Dis Child. 2021;106(12):1202-1206doi: 10.1136/archdischild-2020-321487.
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., Pettorini, B., Smith, M., Smith, R., Sneade, C., Whitney, A., Vloeberghs, M., Zaki, H., & 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
Lodh, Rajib, et al. "Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey." Archives of disease in childhood vol. 106,12 (2021): 1202-1206. doi: https://doi.org/10.1136/archdischild-2020-321487
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. Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey. Arch Dis Child. 2021 Dec;106(12):1202-1206. doi: 10.1136/archdischild-2020-321487. Epub 2021 Apr 14. PMID: 33853760.
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Arch Dis Child. 2021 Dec;106(12):1202-1206. doi: 10.1136/archdischild-2020-321487. Epub 2021 Apr 14.

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

Archives of disease in childhood

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

Affiliations

  1. Department of Paediatric Neurosciences, Leeds Children's Hospital, Leeds, West Yorkshire, UK [email protected].
  2. Department of Paediatric Neurology, University Hospitals Bristol, Bristol, UK.
  3. Department of Paediatric Neurosciences, Queens Medical Centre, Nottingham, UK.
  4. Department of Paediatric Neurology, Great North Children's Hospital, Newcastle Upon Tyne, UK.
  5. Department of Paediatric Neurology, Tayside Children's Hospital, Dundee, UK.
  6. Department of Paediatric Neurosciences, John Radcliffe Hospital, Oxford, UK.
  7. Department of Pediatric Neurosurgery, Temple St Children's University Hospital, Dublin, Ireland.
  8. Department of Paediatric Neurology, Royal Hospital for Sick Children, Edinburgh, UK.
  9. Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK.
  10. Leeds Children's Hospital, Leeds, West Yorkshire, UK.
  11. Complex Motor Disorder Service, Evelina Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK.
  12. Department of Paediatric Neurology, Central Remedial Clinic, Dublin, Ireland.
  13. Department of Paediatric Neurology, Tayside University Hospitals NHS Trust, Dundee, UK.
  14. Department of Paediatric Neurology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
  15. Department of Paediatric Neurology, Southampton Children's Hospital, Southampton, UK.
  16. Department of Paediatric Neurosciences, Nottingham University Hospitals, Nottingham, UK.
  17. Department of Paediatric Neurology, Sheffield Children's Hospital, Sheffield, UK.
  18. Department of Paediatric Neurosciences, Alder Hey Children's NHS Foundation Trust, Liverpool, Merseyside, UK.
  19. Department of Paediatric Neurosciences, University Hospitals Bristol, Bristol, UK.
  20. Department of Neurosciences, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
  21. Department of Paediatric Neurosciences, Guy's and St Thomas' NHS Foundation Trust, London, UK.
  22. Faculty of Life Sciences and Medicine, King's College London, London, UK.

PMID: 33853760 DOI: 10.1136/archdischild-2020-321487

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.

© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.

Keywords: Neurology; Neurosurgery; Rehabilitation

Conflict of interest statement

Competing interests: None declared.

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