Improving Dystonia Management of Children Admitted for Elective Surgical Procedures: A Quality Improvement Project

Abstract

Background Children and young people (CYP) with neurodisability may suffer dystonia exacerbations in the peri- and post-operative period. Objectives This study aimed to identify dystonia-related outcomes for CYP admitted to Evelina Children's Hospital. Methods Elective admissions with coded dystonia and hypertonia diagnoses under paediatric surgical, orthopaedic, and spinal surgical teams from January 1, 2024, to December 31, 2024, were identified over a calendar year in a single tertiary centre. Data were collected regarding baseline number of dystonia medications, if and when dystonia exacerbated, when and what action was taken to manage dystonia exacerbations, and length of admission. Results Data were collected for 180 admissions. In 10.0% of CYP (n = 18), dystonia complicated admission, with 3.9% patients (n = 7) experiencing status dystonicus. Higher baseline medication number was associated with a 10-fold increased length of stay and increased likelihood of dystonia complications during admission. Conclusion A significant minority of our cohort experienced dystonia exacerbations. We propose 3 measures to improve care delivered: documented dystonia action plans, proactive support from named neurology/neurodisability colleagues, and early flagging of high-risk patients.