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The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS)
Han Yan1,2,3, Lauren Siegel4, Sara Breitbart2
1Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, Canada.
Insights
The CHILD-DBS study is creating a comprehensive database to track the safety and effectiveness of deep brain stimulation (DBS) in children, focusing on quality of life and neurodevelopmental outcomes.
Area of Science:
- Pediatric Neurology
- Neurosurgery
- Quality of Life Research
Background:
- Deep brain stimulation (DBS) is established for adult movement disorders but is an emerging treatment for pediatric conditions like epilepsy and dystonia.
- Longitudinal data on pediatric DBS outcomes are limited, hindering comprehensive understanding and treatment optimization.
Purpose of the Study:
- To establish the Child & Youth CompreHensIve Longitudinal Database of DBS (CHILD-DBS) for prospective data collection.
- To evaluate quality of life (QoL), safety, efficacy, and neurodevelopmental outcomes in pediatric patients undergoing DBS.
Main Methods:
- Utilizing Research Electronic Data Capture (REDCap) for multicenter, comprehensive data collection.
- Collecting clinical, QoL, imaging, and electrophysiologic data from pediatric patients (<19 years) undergoing DBS.
- Assessing outcomes at baseline and at 6 months, 1, 2, and 3 years post-surgery.
Main Results:
- The database includes validated QoL measures for children (PedsQL, QOLCE, CHU 9D, KIDSCREEN) and caregivers (QIDS, GAD-7, CarerQoL-7D).
- Healthcare resource utilization, stimulation parameters, and radiographic/electrophysiologic data are also prospectively collected.
- Data collection spans general and indication-specific measures at multiple postoperative time points.
Conclusions:
- The CHILD-DBS database provides a robust framework for multisite collaboration in pediatric DBS research.
- This initiative will enhance understanding of DBS's role in childhood neurological conditions.
- Carefully selected physical and psychosocial outcomes are crucial for advancing pediatric DBS knowledge.
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.
