Prevalence and management of dystonia in a paediatric palliative care cohort


Prevalence and management of dystonia in a paediatric palliative care cohort


Slater T; Laddie J; Hughes G; Lumsden DE



Developmental Medicine And Child Neurology




dystonia; palliative therapy; prevalence; 302-17-0 (chloral hydrate); 4205-90-7 (clonidine); 4205-91-8 (clonidine); 57066-25-8 (clonidine); benzodiazepine derivative; Child; chloral hydrate; Clinical Article; clonidine; cohort analysis; cross-sectional study; Diagnosis; documentation; England; Female; Human; joint; Male; neurology; precancer; preschool child; seizure


Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into "passport type" individual plans, as advocated by the Royal College of Paediatrics and Child Health. This is rarer in dystonia. We evaluated the comparative frequency of dystonia and seizures in a cohort of children receiving paediatric palliative care and examined how emergency plans differ between neurology, palliative care and in collaboration. Methods: We performed a cross-sectional analysis of the palliative care database at Evelina London Children's Hospital, a non-malignant caseload covering southeast England. Documentation over 12 months (preceding July 2017) was reviewed to assess the frequency of patients with dystonia and seizures, current relevant therapies and proposed emergency management. Results: In a cohort of 109 children with a complex range of diagnoses (mean age = 6.0 years), 37% (n=40) suffered from seizures, 27% (n=29) from dystonia and 43% (n=47) from both. Emergency dystonia plans were identified in 51.7% (15/29) of patients: 7 by palliative care and 8 by neurology. No collaborative plans were found. Emergency seizure plans were identified in 80% (32/40) of patients: 11 by palliative care, 9 by neurology and 12 in collaboration. Conclusions: Dystonia is almost as common as seizures in children with non-malignant conditions receiving palliative care. Individualised seizures plans were commonly documented, but less for prolonged dystonic episodes. Dystonia management was more often led by neurology, in contrast to clear evidence of joint working in patients with seizures. Medications differed for dystonia: palliative care promoted conservative measures and benzodiazepines, whereas clonidine hydrochloride and chloral hydrate were favoured by neurology. Paediatric palliative care is playing an increasing role in life-limiting and life-threatening neurological conditions. However, increased collaborative working is essential to ensure consistent patient-focussed management.


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Slater T; Laddie J; Hughes G; Lumsden DE, “Prevalence and management of dystonia in a paediatric palliative care cohort,” Pediatric Palliative Care Library, accessed September 22, 2023,