The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS)
- PDF / 674,900 Bytes
- 9 Pages / 595.276 x 790.866 pts Page_size
- 30 Downloads / 151 Views
ORIGINAL ARTICLE
The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS) Han Yan 1,2,3 & Lauren Siegel 5 & Sara Breitbart 2 & Carolina Gorodetsky 7 & Hernan D. Gonorazky 7 & Ivanna Yau 7 & Cristina Go 7 & Elizabeth Donner 7 & Suneil K. Kalia 1,4,6,8,10 & Alfonso Fasano 8,9,10 & Alexander G. Weil 11,12 & Aria Fallah 13 & George M. Ibrahim 1,2,14,15 Received: 17 August 2020 / Accepted: 4 September 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Purpose Deep brain stimulation (DBS) is a common tool for the treatment of movement disorders in adults; however, it remains an emerging treatment modality in children with a growing number of indications, including epilepsy and dystonia. The Child & Youth CompreHensIve Longitudinal Database of DBS (CHILD-DBS) study aims to prospectively collect relevant data on quality of life (QoL), safety, efficacy, and long-term neurodevelopmental outcomes following DBS in children. Methods Data are collected and managed using the Research Electronic Data Capture (REDCap). This database aims to collect multicentre comprehensive and longitudinal clinical, QoL, imaging and electrophysiologic data for children under the age of 19 undergoing DBS. Results Both general and indication-specific measures are collected at baseline and at four time points postoperatively: 6 months, 1 year, 2 years, and 3 years. The database encompasses QoL metrics for children, including the PedsQL (Pediatric Quality of Life Inventory, generic), QOLCE (Quality of Life in Childhood Epilepsy Questionnaire, parent-rated), CHU 9D (Child Health Utility 9D), and KIDSCREEN. Caregiver clinical and QoL metrics, including QIDS (Quick Inventory of Depressive Symptomatology), GAD-7 (Generalized Anxiety Disorder 7-item scale), and CarerQoL-7D (The Care-related Quality of Life Instrument), are similarly prospectively collected. Healthcare resource utilization is also assessed before and after DBS. Lastly, stimulation parameters and radiographic and electrophysiologic data are collected within the database. Conclusions The development of the current prospective paediatric DBS database with carefully selected physical and psychosocial outcomes and assessments will complement existing efforts to enhance and facilitate multisite collaboration to further understand the role of DBS in childhood. Keywords Paediatric . Deep brain stimulation . Registry . Neuroimaging . Health resource utilization . Quality of life
Introduction Deep brain stimulation (DBS) is a neurosurgical procedure that has been widely applied for the treatment of numerous neurological conditions for over three decades. The majority of experience with DBS is derived from the treatment of movement disorders in adults, where considerable success has been achieved in diseases such as Parkinson’s disease (PD), dystonia, and essential tremor [1]. In children, DBS is a safe and established treatment for various neurological conditions and the indications in this population continue to expand. * George M. Ibrah
Data Loading...
