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Intrathecal baclofen pumps in the management of hypertonia in childhood: a UK and Ireland wide survey
  1. Rajib Lodh1,
  2. Sam Amin2,
  3. Amr Ammar3,
  4. Lucy Bellis4,
  5. Phillip Brink5,
  6. Amedeo Calisto6,
  7. Darach Crimmins7,
  8. Paul Eunson8,
  9. Rob J Forsyth4,9,
  10. John Goodden10,
  11. Margaret Kaminska11,
  12. Joanne Kehoe12,
  13. Martin Kirkpatrick13,
  14. Ram Kumar14,
  15. Jane Leonard12,
  16. Alice Lording15,
  17. Katherine Martin16,
  18. Russell Miller4,
  19. Santosh R Mordekar17,
  20. Benedetta Pettorini18,
  21. Martin Smith6,
  22. Rachel Smith19,
  23. Christine Sneade18,
  24. Andrea Whitney15,
  25. Michael Vloeberghs3,
  26. Hesham Zaki20,
  27. Daniel E Lumsden21,22
  1. 1Department of Paediatric Neurosciences, Leeds Children's Hospital, Leeds, West Yorkshire, UK
  2. 2Department of Paediatric Neurology, University Hospitals Bristol, Bristol, UK
  3. 3Department of Paediatric Neurosciences, Queens Medical Centre, Nottingham, UK
  4. 4Department of Paediatric Neurology, Great North Children's Hospital, Newcastle Upon Tyne, UK
  5. 5Department of Paediatric Neurology, Tayside Children’s Hospital, Dundee, UK
  6. 6Department of Paediatric Neurosciences, John Radcliffe Hospital, Oxford, UK
  7. 7Department of Pediatric Neurosurgery, Temple St Children's University Hospital, Dublin, Ireland
  8. 8Department of Paediatric Neurology, Royal Hospital for Sick Children, Edinburgh, UK
  9. 9Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
  10. 10Leeds Children's Hospital, Leeds, West Yorkshire, UK
  11. 11Complex Motor Disorder Service, Evelina Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK
  12. 12Department of Paediatric Neurology, Central Remedial Clinic, Dublin, Ireland
  13. 13Department of Paediatric Neurology, Tayside University Hospitals NHS Trust, Dundee, UK
  14. 14Department of Paediatric Neurology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK
  15. 15Department of Paediatric Neurology, Southampton Children's Hospital, Southampton, UK
  16. 16Department of Paediatric Neurosciences, Nottingham University Hospitals, Nottingham, UK
  17. 17Department of Paediatric Neurology, Sheffield Children's Hospital, Sheffield, UK
  18. 18Department of Paediatric Neurosciences, Alder Hey Children's NHS Foundation Trust, Liverpool, Merseyside, UK
  19. 19Department of Paediatric Neurosciences, University Hospitals Bristol, Bristol, UK
  20. 20Department of Neurosciences, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  21. 21Department of Paediatric Neurosciences, Guy's and St Thomas' NHS Foundation Trust, London, UK
  22. 22Faculty of Life Sciences and Medicine, King's College London, London, UK
  1. Correspondence to Dr Rajib Lodh, Paediatric Neurorehabilitation, Leeds Children's Hospital, Leeds LS1 3EX, UK; r.lodh{at}nhs.net

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.

  • Neurology
  • Neurosurgery
  • Rehabilitation

Data availability statement

Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. Anonymised spreadsheet of intrathecal baclofen (ITB) details for all children and young people receiving ITB therapy in UK and Ireland. Available on request to contributing author (RJ).

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Data availability statement

Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. Anonymised spreadsheet of intrathecal baclofen (ITB) details for all children and young people receiving ITB therapy in UK and Ireland. Available on request to contributing author (RJ).

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Footnotes

  • Contributors RL designed the study, performed data collection and wrote the first draft of the manuscript. DEL advised on study design. DEL and SRM reviewed and revised early drafts of the manuscript. All authors collected and submitted data, reviewed and agreed on the final manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

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  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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