The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS).
Deep brain stimulation
Health resource utilization
Neuroimaging
Paediatric
Quality of life
Registry
Journal
Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery
ISSN: 1433-0350
Titre abrégé: Childs Nerv Syst
Pays: Germany
ID NLM: 8503227
Informations de publication
Date de publication:
02 2021
02 2021
Historique:
received:
17
08
2020
accepted:
04
09
2020
pubmed:
17
9
2020
medline:
25
6
2021
entrez:
16
9
2020
Statut:
ppublish
Résumé
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. 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. 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. 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.
Identifiants
pubmed: 32935233
doi: 10.1007/s00381-020-04880-4
pii: 10.1007/s00381-020-04880-4
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
607-615Références
Miocinovic S, Somayajula S, Chitnis S, Vitek JL (2013) History, applications, and mechanisms of deep brain stimulation. JAMA Neurol 70:163–171
pubmed: 23407652
Coubes P, Echenne B, Roubertie A, Vayssiere N, Tuffery S, Humbertclaude V, Cambonie G, Claustres M, Frerebeau P (1999) Treatment of early-onset generalized dystonia by chronic bilateral stimulation of the internal globus pallidusApropos of a case. Neurochirurgie 45:139–144
pubmed: 10448655
Anderson WS, Lenz FA (2006) Surgery insight: deep brain stimulation for movement disorders. Nat Clin Pract Neurol 2:310–320
pubmed: 16932575
DeLong M, Wichmann T (2012) Deep brain stimulation for movement and other neurologic disorders. Ann N Y Acad Sci 1265:1–8
pubmed: 22823512
pmcid: 4314938
Yu H, Neimat JS (2008) The treatment of movement disorders by deep brain stimulation. Neurotherapeutics 5:26–36
pubmed: 18164481
pmcid: 5084124
Elkaim LM, Alotaibi NM, Sigal A, Alotaibi HM, Lipsman N, Kalia SK, Fehlings DL, Lozano AM, Ibrahim GM, North American Pediatric DBSC (2019) Deep brain stimulation for pediatric dystonia: a meta-analysis with individual participant data. Dev Med Child Neurol 61:49–56
pubmed: 30320439
Fisher R, Salanova V, Witt T, Worth R, Henry T, Gross R, Oommen K, Osorio I, Nazzaro J, Labar D, Kaplitt M, Sperling M, Sandok E, Neal J, Handforth A, Stern J, DeSalles A, Chung S, Shetter A, Bergen D, Bakay R, Henderson J, French J, Baltuch G, Rosenfeld W, Youkilis A, Marks W, Garcia P, Barbaro N, Fountain N, Bazil C, Goodman R, McKhann G, Babu Krishnamurthy K, Papavassiliou S, Epstein C, Pollard J, Tonder L, Grebin J, Coffey R, Graves N, Group SS (2010) Electrical stimulation of the anterior nucleus of thalamus for treatment of refractory epilepsy. Epilepsia 51:899–908
pubmed: 20331461
Yan H, Toyota E, Anderson M, Abel TJ, Donner E, Kalia SK, Drake J, Rutka JT, Ibrahim GM (2018) A systematic review of deep brain stimulation for the treatment of drug-resistant epilepsy in childhood. J Neurosurg Pediatr 23:274–284
pubmed: 30544364
Yan H, Snead C, Ibrahim GM (2019) Epilepsy surgery for children with severe developmental delay: an ethical double jeopardy. Epilepsy Behav 90:287–290
pubmed: 30477990
Valentin A, Garcia Navarrete E, Chelvarajah R, Torres C, Navas M, Vico L, Torres N, Pastor J, Selway R, Sola RG, Alarcon G (2013) Deep brain stimulation of the centromedian thalamic nucleus for the treatment of generalized and frontal epilepsies. Epilepsia 54:1823–1833
pubmed: 24032641
Velasco F, Velasco M, Ogarrio C, Fanghanel G (1987) Electrical stimulation of the centromedian thalamic nucleus in the treatment of convulsive seizures: a preliminary report. Epilepsia 28:421–430
pubmed: 3497802
Velasco F, Velasco M, Jimenez F, Velasco AL, Brito F, Rise M, Carrillo-Ruiz JD (2000) Predictors in the treatment of difficult-to-control seizures by electrical stimulation of the centromedian thalamic nucleus. Neurosurgery 47:295–304 discussion 304-295
pubmed: 10942002
Velasco AL, Velasco F, Jimenez F, Velasco M, Castro G, Carrillo-Ruiz JD, Fanghanel G, Boleaga B (2006) Neuromodulation of the centromedian thalamic nuclei in the treatment of generalized seizures and the improvement of the quality of life in patients with Lennox-Gastaut syndrome. Epilepsia 47:1203–1212
pubmed: 16886984
Kim SH, Lim SC, Yang DW, Cho JH, Son BC, Kim J, Hong SB, Shon YM (2017) Thalamo-cortical network underlying deep brain stimulation of centromedian thalamic nuclei in intractable epilepsy: a multimodal imaging analysis. Neuropsychiatr Dis Treat 13:2607–2619
pubmed: 29089767
pmcid: 5655132
Yan H, Boutet A, Mithani K, Germann J, Elias GJB, Yau I, Go C, Kalia SK, Lozano AM, Fasano A, Ibrahim GM (2020) Aggressiveness after centromedian nucleus stimulation engages prefrontal thalamocortical circuitry. Brain Stimul 13:357–359
pubmed: 31727583
Valentin A, Selway RP, Amarouche M, Mundil N, Ughratdar I, Ayoubian L, Martin-Lopez D, Kazi F, Dar T, Jimenez-Jimenez D, Hughes E, Alarcon G (2017) Intracranial stimulation for children with epilepsy. Eur J Paediatr Neurol 21:223–231
pubmed: 27840024
DiFrancesco MF, Halpern CH, Hurtig HH, Baltuch GH, Heuer GG (2012) Pediatric indications for deep brain stimulation. Childs Nerv Syst 28:1701–1714
pubmed: 22828866
Marks WA, Honeycutt J, Acosta F, Reed M (2009) Deep brain stimulation for pediatric movement disorders. Semin Pediatr Neurol 16:90–98
pubmed: 19501337
Coulombe MA, Elkaim LM, Alotaibi NM, Gorman DA, Weil AG, Fallah A, Kalia SK, Lipsman N, Lozano AM, Ibrahim GM (2018) Deep brain stimulation for Gilles de la Tourette syndrome in children and youth: a meta-analysis with individual participant data. J Neurosurg Pediatr 23:236–246
pubmed: 30497215
Wu H, Van Dyck-Lippens PJ, Santegoeds R, van Kuyck K, Gabriels L, Lin G, Pan G, Li Y, Li D, Zhan S, Sun B, Nuttin B (2013) Deep-brain stimulation for anorexia nervosa. World Neurosurg 80(S29):e21–e10
Davidson B, Elkaim LM, Lipsman N, Ibrahim GM (2018) Editorial. An ethical framework for deep brain stimulation in children. Neurosurg Focus 45:E11
pubmed: 30173615
Rodrigues NB, Mithani K, Meng Y, Lipsman N, Hamani C (2018) The emerging role of tractography in deep brain stimulation: basic principles and current applications. Brain Sci 8:23
pmcid: 5836042
Marks W, Bailey L, Sanger TD (2017) PEDiDBS: The pediatric international deep brain stimulation registry project. Eur J Paediatr Neurol 21:218–222
pubmed: 27375173
Koy A, Weinsheimer M, Pauls KA, Kuhn AA, Krause P, Huebl J, Schneider GH, Deuschl G, Erasmi R, Falk D, Krauss JK, Lutjens G, Schnitzler A, Wojtecki L, Vesper J, Korinthenberg R, Coenen VA, Visser-Vandewalle V, Hellmich M, Timmermann L, Consortium G (2017) German registry of paediatric deep brain stimulation in patients with childhood-onset dystonia (GEPESTIM). Eur J Paediatr Neurol 21:136–146
pubmed: 27424797
Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (REDCap)-a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42:377–381
pubmed: 18929686
Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O’Neal L, McLeod L, Delacqua G, Delacqua F, Kirby J, Duda SN, Consortium RE (2019) The REDCap consortium: building an international community of software platform partners. J Biomed Inform 95:103208
pubmed: 31078660
pmcid: 7254481
Burke RE, Fahn S, Marsden CD, Bressman SB, Moskowitz C, Friedman J (1985) Validity and reliability of a rating scale for the primary torsion dystonias. Neurology 35:73–77
pubmed: 3966004
Scheffer IE, Berkovic S, Capovilla G, Connolly MB, French J, Guilhoto L, Hirsch E, Jain S, Mathern GW, Moshe SL, Nordli DR, Perucca E, Tomson T, Wiebe S, Zhang YH, Zuberi SM (2017) ILAE classification of the epilepsies: position paper of the ILAE Commission for Classification and Terminology. Epilepsia 58:512–521
pubmed: 28276062
pmcid: 5386840
McHugh JC, Singh HW, Phillips J, Murphy K, Doherty CP, Delanty N (2007) Outcome measurement after vagal nerve stimulation therapy: proposal of a new classification. Epilepsia 48:375–378
pubmed: 17295633
Cramer JA, Baker GA, Jacoby A (2002) Development of a new seizure severity questionnaire: initial reliability and validity testing. Epilepsy Res 48:187–197
pubmed: 11904237
Carpay JA, Vermuelen J, Stroink H, Brouwer OF, Peters AC, Aldenkamp AP, van Donselaar CA, Arts WF (1997) Seizure severity in children with epilepsy: a parent-completed scale compared with clinical data. Epilepsia 38:346–352
pubmed: 9070598
Varni JW, Seid M, Rode CA (1999) The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37:126–139
pubmed: 10024117
Sabaz M, Lawson JA, Cairns DR, Duchowny MS, Resnick TJ, Dean PM, Bleasel AF, Bye AM (2006) The impact of epilepsy surgery on quality of life in children. Neurology 66:557–561
pubmed: 16505311
Conway L, Widjaja E, Smith ML (2018) Impact of resective epilepsy surgery on health-related quality of life in children with and without low intellectual ability. Epilepsy Behav 83:131–136
pubmed: 29705622
Stevens K (2012) Valuation of the Child Health Utility 9D Index. Pharmacoeconomics 30:729–747
pubmed: 22788262
Stevens KJ (2010) Working with children to develop dimensions for a preference-based, generic, pediatric, health-related quality-of-life measure. Qual Health Res 20:340–351
pubmed: 20054040
Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W, Auquier P, Power M, Abel T, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J, KIDSCREEN Group E (2005) KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res 5:353–364
pubmed: 19807604
Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Power M, Duer W, Auquier P, Cloetta B, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J, Group K (2008) The KIDSCREEN-52 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Value Health 11:645–658
pubmed: 18179669
Bernstein IH, Rush AJ, Trivedi MH, Hughes CW, Macleod L, Witte BP, Jain S, Mayes TL, Emslie GJ (2010) Psychometric properties of the Quick Inventory of Depressive Symptomatology in adolescents. Int J Methods Psychiatr Res 19:185–194
pubmed: 20683845
pmcid: 2978808
Spitzer RL, Kroenke K, Williams JB, Lowe B (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166:1092–1097
pubmed: 16717171
Brouwer WB, van Exel NJ, van Gorp B, Redekop WK (2006) The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res 15:1005–1021
pubmed: 16900281
Amtmann D, Cook KF, Jensen MP, Chen WH, Choi S, Revicki D, Cella D, Rothrock N, Keefe F, Callahan L, Lai JS (2010) Development of a PROMIS item bank to measure pain interference. Pain 150:173–182
pubmed: 20554116
pmcid: 2916053
Munhoz RP, Picillo M, Fox SH, Bruno V, Panisset M, Honey CR, Fasano A (2016) Eligibility criteria for deep brain stimulation in Parkinson’s disease, tremor, and dystonia. Can J Neurol Sci 43:462–471
pubmed: 27139127
Lozano CS, Ranjan M, Boutet A, Xu DS, Kucharczyk W, Fasano A, Lozano AM (2018) Imaging alone versus microelectrode recording-guided targeting of the STN in patients with Parkinson’s disease. J Neurosurg: 1-6
Koss AM, Alterman RL, Tagliati M, Shils JL (2005) Calculating total electrical energy delivered by deep brain stimulation systems. Ann Neurol 58:168 author reply 168-169
pubmed: 15984018
Horn A, Li N, Dembek TA, Kappel A, Boulay C, Ewert S, Tietze A, Husch A, Perera T, Neumann WJ, Reisert M, Si H, Oostenveld R, Rorden C, Yeh FC, Fang Q, Herrington TM, Vorwerk J, Kuhn AA (2019) Lead-DBS v2: towards a comprehensive pipeline for deep brain stimulation imaging. Neuroimage 184:293–316
pubmed: 30179717
Glasser MF, Smith SM, Marcus DS, Andersson JL, Auerbach EJ, Behrens TE, Coalson TS, Harms MP, Jenkinson M, Moeller S, Robinson EC, Sotiropoulos SN, Xu J, Yacoub E, Ugurbil K, Van Essen DC (2016) The Human Connectome Project’s neuroimaging approach. Nat Neurosci 19:1175–1187
pubmed: 27571196
pmcid: 6172654
Elkaim LM, De Vloo P, Kalia SK, Lozano AM, Ibrahim GM (2018) Deep brain stimulation for childhood dystonia: current evidence and emerging practice. Expert Rev Neurother 18:773–784
pubmed: 30221558
Spottke EA, Volkmann J, Lorenz D, Krack P, Smala AM, Sturm V, Gerstner A, Berger K, Hellwig D, Deuschl G, Freund HJ, Oertel WH, Dodel RC (2002) Evaluation of healthcare utilization and health status of patients with Parkinson’s disease treated with deep brain stimulation of the subthalamic nucleus. J Neurol 249:759–766
pubmed: 12111311
Dang TTH, Rowell D, Connelly LB (2019) Cost-effectiveness of deep brain stimulation with movement disorders: a systematic review. Mov Disord Clin Pract 6:348–358
pubmed: 31286004
pmcid: 6592789