Implementation of Paediatric Deep Brain Stimulation: Experience from an Australian Tertiary Centre

PurposeThis study presents an evolving decision-making approach for deep brain stimulation (DBS) in children with movement disorders at an Australian tertiary centre.MethodsA retrospective review of paediatric patients referred for DBS was conducted. We present decision-making determinants and clinical details for DBS referrals. We also describe assessment frameworks before and after establishment of an interdisciplinary team (IDT) model in 2017. Motor, non-motor, and functional outcomes are presented, including patient-reported outcome measures (PROMs), patient-reported experience measures (PREMs), and a qualitative sub-study.ResultsBefore the IDT was established, 4 patients underwent DBS (2 idiopathic, 1 inherited, 1 acquired dystonia). The IDT considered 44 referrals, determining 25/42 unsuitable for DBS given MRI abnormalities, unsuitable phenomenology, or parental apprehension. Twelve patients underwent DBS at our centre after discussion in the IDT (11 inherited, 1 idiopathic dystonia). Treatment was most effective for inherited dystonia and severe acute motor exacerbations (SAME) (n = 4). Younger age was not a limiting factor for considering DBS. Outcome measures showed improved motor symptoms, quality of life, and satisfaction.ConclusionWe propose an interdisciplinary framework for collaborative decision making for DBS in children including family expectations. Outcome evaluation should be multifaceted, including PROMs and PREMs that reflect patient priorities.