Related Experiment Video
Updated: Jan 15, 2026
Targeting Neuronal Fiber Tracts for Deep Brain Stimulation Therapy Using Interactive, Patient-Specific Models
Published on: August 12, 2018
Deep brain stimulation in the management of movement disorders in childhood: a UK-wide cross-sectional study
Daniel E Lumsden1,2, Ramalakshmi Ramiah3, Todd Smallbone4
1Children's Neurosciences, Evelina London Children's Hospital, London, UK daniel.lumsden@nhs.net.
Insights
Deep brain stimulation (DBS) in children and young people (CAYP) with movement disorders shows diverse causes and functional levels. Current UK provision serves a small fraction of CAYP who could benefit from DBS.
Area of Science:
- Neurology
- Pediatric Medicine
- Neurosurgery
Background:
- Deep brain stimulation (DBS) is a therapeutic option for movement disorders in children and young people (CAYP).
- Understanding the clinical characteristics of CAYP undergoing DBS is crucial for service planning in the UK.
Purpose of the Study:
- To establish the clinical characteristics of CAYP receiving DBS for movement disorders in the UK.
- To inform future service provision planning for this patient group.
Main Methods:
- A cross-sectional service evaluation was conducted across UK centers providing DBS for pediatric movement disorders.
- Data on patient demographics, diagnoses, functional status, and medication use were collected.
Main Results:
- 139 CAYP received DBS, with a median age of 9.8 years at surgery.
- Common diagnoses included dyskinetic cerebral palsy (49.6%) and genetic dystonias (DYT-KMT2B, DYT-TOR1A).
- Significant dystonia was present in all patients, with varying levels of chorea and spasticity; 30.9% used no tone-reducing medications.
Conclusions:
- CAYP receiving DBS are a heterogeneous group regarding etiology, functional level, and medication needs.
- The current UK provision of DBS for CAYP (102 patients <18 years) represents a small proportion of those who could potentially benefit.
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.
