Deep brain stimulation in the management of movement disorders in childhood: a UK-wide cross-sectional study

Daniel E Lumsden; Ramalakshmi Ramiah; Todd Smallbone; Will Singleton; Sam Amin; Sarah Perides; Gina Lumsdon; Reiko Ashida; Jonathan Ellenbogen; Keymoumars Ashkan; Richard Selway; Margaret Kaminska; Harutomo Hasegawa; Jean-Pierre Lin

doi:10.1136/archdischild-2025-328889

Deep brain stimulation in the management of movement disorders in childhood: a UK-wide cross-sectional study

Arch Dis Child. 2026 Jan 19;111(2):147-152. doi: 10.1136/archdischild-2025-328889.

Authors

Daniel E Lumsden^{1

2}, Ramalakshmi Ramiah³, Todd Smallbone⁴, Will Singleton^{5

6}, Sam Amin^{7

8}, Sarah Perides⁹, Gina Lumsdon³, Reiko Ashida¹⁰, Jonathan Ellenbogen¹¹, Keymoumars Ashkan^{12

13}, Richard Selway¹², Margaret Kaminska¹⁴, Harutomo Hasegawa¹², Jean-Pierre Lin¹⁴

Affiliations

¹ Children's Neurosciences, Evelina London Children's Hospital, London, UK daniel.lumsden@nhs.net.
² Research Department of Early Life Imaging, Biomedical Engineering and Imaging Sciences, King's College London, London, UK.
³ Paediatric Neurology, Alder Hey Children's Hospital, Liverpool, UK.
⁴ Department of Paediatric Neurology, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.
⁵ Paediatric Neurosurgery, Bristol Royal Hospital for Children, Bristol, UK.
⁶ Translational Health Services, University of Bristol, Bristol, UK.
⁷ Department of Paediatric Neurology, Bristol Royal Hospital for Children, Bristol, UK.
⁸ School of Physiology, Pharmacology and Neuroscience, University of Bristol, Bristol, UK.
⁹ Children's Neurosciences, Evelina London Children's Hospital, London, UK.
¹⁰ Department of Neurosurgery, North Bristol NHS Trust, Bristol, UK.
¹¹ Department of Neurosurgery, Alder Hey Children's Hospital, Liverpool, UK.
¹² Functional Neurosurgery, King's College Hospital, London, UK.
¹³ Department of Basic and Clinical Neuroscience, Institute of Psychiatry, Psychology and Neuroscience, London, UK.
¹⁴ Complex Motor Disorder Service, Evelina Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK.

PMID: 41093365
DOI: 10.1136/archdischild-2025-328889

Abstract

Introduction: We aimed to establish the clinical characteristics of children and young people (CAYP) currently receiving deep brain stimulation (DBS) therapy for the management of movement disorders in the UK to better inform planning of future service provision.

Methods: Cross-sectional service evaluation of centres providing DBS for the management of movement disorders in childhood.

Results: A total of 139 CAYP were identified across three centres. Median age at surgery was 9.8 years (range 2.0-18.9 years), and median duration of DBS was 4.4 years (range from 1 week to 15.75 years). Modal Gross Motor Function Classification System level was V (n=66). The most common causes of movement disorder were dyskinetic cerebral palsy (69/139, 49.6%), dystonia due to mutations in the lysine methyltransferase 2B gene, aka DYT-KMT2B, (13/139, 9.4%) and dystonia due to mutations in the Torsin-1A gene, aka DYT-TOR1A, (9/139, 6.5%). A monogenetic cause of dystonia without evidence of central nervous system pathology on MRI was identified in 30 CAYP (21.6%). Clinically significant dystonia was present in all CAYP, with significant chorea in 47/139 (33.8%) and significant spasticity in only 13/139 (9.4%). No tone-reducing medications were currently used by 43/139 (30.9%) of CAYP. The remaining 96/139 CAYP were currently receiving 1-6 tone-reducing medications, most commonly gabapentin (n=58), clonidine (n=50) and a form of benzodiazepine (n=43). Despite care being provided by paediatric services, 37/139 (26.6%) of CAYP were >18 years of age.

Conclusions: CAYP currently receiving DBS therapy represent a heterogeneous population in terms of dystonia aetiology, functional level and additional pharmacological management. Only 102 CAYP<18 years of age are currently receiving DBS therapy in the UK, representing a small proportion of the population who could benefit from this intervention.

Keywords: Child Health; Neurology; Technology.

Publication types

Multicenter Study

MeSH terms

Adolescent
Child
Child, Preschool
Cross-Sectional Studies
Deep Brain Stimulation* / methods
Female
Humans
Male
Movement Disorders* / therapy
Treatment Outcome
United Kingdom