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

https://doi.org/10.1136/archdischild-2020-321487

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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.

    • Map disclaimer The depiction of boundaries on this map does not imply the expression of any opinion whatsoever on the part of BMJ (or any member of its group) concerning the legal status of any country, territory, jurisdiction or area or of its authorities. This map is provided without any warranty of any kind, either express or implied.

    • Competing interests None declared.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.