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Published on: August 12, 2018
Implementation of Paediatric Deep Brain Stimulation: Experience from an Australian Tertiary Centre
Jamie M Barnacoat1,2, Wafa Bani Uraba3, Dianah Hadi4
1Kids Neuroscience Centre, Sydney Children's Hospital Network, Westmead, NSW, Australia.
Insights
This study introduces an interdisciplinary team approach for pediatric deep brain stimulation (DBS) decision-making. The framework improves outcomes for children with movement disorders, emphasizing patient and family priorities.
Area of Science:
- Pediatric Neurology
- Neurosurgery
- Movement Disorders
Background:
- Deep brain stimulation (DBS) is an evolving treatment for pediatric movement disorders.
- Decision-making for pediatric DBS requires careful consideration of complex factors.
Purpose of the Study:
- To present an evolving decision-making approach for pediatric deep brain stimulation (DBS) in Australia.
- To describe the impact of an interdisciplinary team (IDT) model on DBS referrals and outcomes.
Main Methods:
- Retrospective review of pediatric patients referred for DBS.
- Comparison of assessment frameworks before and after IDT implementation in 2017.
- Analysis of motor, non-motor, functional outcomes, PROMs, and PREMs.
Main Results:
- Twelve pediatric patients underwent DBS after IDT review, primarily for inherited dystonia.
- Treatment showed effectiveness for inherited dystonia and severe acute motor exacerbations.
- Improved motor symptoms, quality of life, and patient satisfaction were observed.
Conclusions:
- An interdisciplinary framework supports collaborative DBS decision-making in children, incorporating family expectations.
- Multifaceted outcome evaluation, including PROMs and PREMs, is crucial for reflecting patient priorities.
Abstract:
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.
