The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS).,Child's Nervous System

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The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS).
Child's Nervous System ( IF 1.3 ) Pub Date : 2020-09-15 , DOI: 10.1007/s00381-020-04880-4
Han Yan _{1,

2,

3} , Lauren Siegel ₄ , Sara Breitbart ₂ , Carolina Gorodetsky ₅ , Hernan D Gonorazky ₅ , Ivanna Yau ₅ , Cristina Go ₅ , Elizabeth Donner ₅ , Suneil K Kalia _{1,

6,

7,

8,

9} , Alfonso Fasano _{8,

9,

10} , Alexander G Weil _{11,

12} , Aria Fallah ₁₃ , George M Ibrahim _{1,

2,

14,

15}

Affiliation

Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, Canada.
Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, Canada.
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.
Neurosciences and Mental Health Program, The Hospital for Sick Children, Toronto, Ontario, Canada.
Division of Neurology, The Hospital for Sick Children, Toronto, Ontario, Canada.
University Health Network, Toronto, Ontario, Canada.
Division of Neurosurgery, Toronto Western Hospital, Toronto, Canada.
Krembil Brain Institute, Toronto, Ontario, Canada.
CenteR for Advancing Neurotechnological Innovation to Application (CRANIA), Toronto, Ontario, Canada.
Edmond J. Safra Program in Parkinson's Disease, Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital, University Health Network, Division of Neurology, University of Toronto, Toronto, Ontario, Canada.
Faculty of Medicine, Université de Montréal, Montreal, Quebec, Canada.
Division of Neurosurgery and Pediatrics, Sainte Justine Hospital, Montreal, Quebec, Canada.
Department of Neurosurgery, UCLA Mattel Children's Hospital, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA.
Institute of Biomedical Engineering, University of Toronto, Toronto, Ontario, Canada.
Institute of Medical Science, University of Toronto, Toronto, Ontario, Canada.

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.

中文翻译：

儿童和青少年全面脑深部刺激纵向数据库（CHILD-DBS）。

目的

深部脑刺激（DBS）是治疗成人运动障碍的常用工具；然而，它仍然是一种针对儿童的新兴治疗方式，其适应症包括癫痫和肌张力障碍。DBS的儿童青少年综合纵向数据库（CHILD-DBS）旨在前瞻性收集儿童DBS术后的生活质量（QoL），安全性，疗效和长期神经发育结局的相关数据。

方法

使用研究电子数据捕获（REDCap）收集和管理数据。该数据库旨在收集19岁以下接受DBS治疗的儿童的多中心综合纵向临床，QoL，影像学和电生理数据。

结果

在基线和术后四个时间点（即6个月，1年，2年和3年）收集常规和适应症指标。该数据库包含针对儿童的QoL指标，包括PedsQL（儿童生命质量量表，通用），QOLCE（儿童癫痫病问卷的生活质量，父母评分），CHU 9D（儿童健康实用程序9D）和KIDSCREEN。类似地，前瞻性地收集了护理者的临床和QoL指标，包括QIDS（抑郁症状的快速清单），GAD-7（广义焦虑症7项量表）和CarerQoL-7D（与护理有关的生活质量仪器）。在星展银行之前和之后，还将评估医疗保健资源的利用率。最后，在数据库中收集刺激参数以及射线照相和电生理数据。