Deep Brain Stimulation in Movement Disorders in Childhood: A UK-Wide Cross-Sectional Study

Strategic Insights -

Children and young people with movement disorders in the UK who receive deep brain stimulation (DBS) therapy exhibit a range of clinical characteristics, including varying causes of movement disorder, functional levels, and pharmacological management. The research highlights the need for better planning of future service provision to meet the diverse needs of these patients.

Key Takeaways:

  • A total of 139 children and young people (CAYP) with movement disorders received DBS therapy in three UK centers, with a median age at surgery of 9.8 years (range 2.0-18.9 years) and a median duration of DBS of 4.4 years (range from 1 week to 15.75 years).
  • The most common causes of movement disorder were dyskinetic cerebral palsy (49.6%), dystonia due to mutations in the lysine methyltransferase 2B gene (9.4%), and dystonia due to mutations in the Torsin-1A gene (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, while 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 pediatric services, 37/139 (26.6%) of CAYP were 18 years of age, highlighting the need for transition planning to adult services.
  • The study emphasizes the importance of addressing the diverse needs of CAYP with movement disorders through tailored care plans and service provision.

Statistics:

  • 139 CAYP received DBS therapy in three UK centers.
  • Median age at surgery: 9.8 years (range 2.0-18.9 years).
  • Median duration of DBS: 4.4 years (range from 1 week to 15.75 years).
  • 49.6% of CAYP had dyskinetic cerebral palsy.
  • 9.4% of CAYP had dystonia due to mutations in the lysine methyltransferase 2B gene.
  • 6.5% of CAYP had dystonia due to mutations in the Torsin-1A gene.
  • 21.6% of CAYP had a monogenetic cause of dystonia without evidence of central nervous system pathology on MRI.
  • 33.8% of CAYP had significant chorea.
  • 9.4% of CAYP had significant spasticity.
  • 30.9% of CAYP did not receive tone-reducing medications.

Sources:

  • Deep brain stimulation in the management of movement disorders in childhood: a UK-wide cross-sectional study (2025). Archives of Disease in Childhood, 2025.
  • NewsRx. Findings from Evelina London Children's Hospital Broadens Understanding of Movement Disorders (Deep brain stimulation in the management of movement disorders in childhood: a UK-wide cross-sectional study). Pediatrics Week. November 1, 2025; p 340.