title: Recommendations for the use of common outcome measures in pediatric traumatic brain injury research.
abstract: This article addresses the need for age-relevant outcome measures for traumatic brain injury (TBI) research and summarizes the recommendations by the inter-agency Pediatric TBI Outcomes Workgroup. The Pediatric Workgroup's recommendations address primary clinical research objectives including characterizing course of recovery from TBI, prediction of later outcome, measurement of treatment effects, and comparison of outcomes across studies. Consistent with other Common Data Elements (CDE) Workgroups, the Pediatric TBI Outcomes Workgroup adopted the standard three-tier system in its selection of measures. In the first tier, core measures included valid, robust, and widely applicable outcome measures with proven utility in pediatric TBI from each identified domain including academics, adaptive and daily living skills, family and environment, global outcome, health-related quality of life, infant and toddler measures, language and communication, neuropsychological impairment, physical functioning, psychiatric and psychological functioning, recovery of consciousness, social role participation and social competence, social cognition, and TBI-related symptoms. In the second tier, supplemental measures were recommended for consideration in TBI research focusing on specific topics or populations. In the third tier, emerging measures included important instruments currently under development, in the process of validation, or nearing the point of published findings that have significant potential to be superior to measures in the core and supplemental lists and may eventually replace them as evidence for their utility emerges.
authors.affiliation: Department of Physical Medicine and Rehabilitation, Neurology, and Pediatrics, Baylor College of Medicine, and the Michael E. DeBakey Veterans Administration Medical Center, Houston, Texas 77030, USA. mccauley@bcm.edu
authors.forename: Stephen R
authors.initials: SR
authors.lastname: McCauley
authors.forename: Elisabeth A
authors.initials: EA
authors.lastname: Wilde
authors.forename: Vicki A
authors.initials: VA
authors.lastname: Anderson
authors.forename: Gary
authors.initials: G
authors.lastname: Bedell
authors.forename: Sue R
authors.initials: SR
authors.lastname: Beers
authors.forename: Thomas F
authors.initials: TF
authors.lastname: Campbell
authors.forename: Sandra B
authors.initials: SB
authors.lastname: Chapman
authors.forename: Linda
authors.initials: L
authors.lastname: Ewing-Cobbs
authors.forename: Joan P
authors.initials: JP
authors.lastname: Gerring
authors.forename: Gerard A
authors.initials: GA
authors.lastname: Gioia
authors.forename: Harvey S
authors.initials: HS
authors.lastname: Levin
authors.forename: Linda J
authors.initials: LJ
authors.lastname: Michaud
authors.forename: Mary R
authors.initials: MR
authors.lastname: Prasad
authors.forename: Bonnie R
authors.initials: BR
authors.lastname: Swaine
authors.forename: Lyn S
authors.initials: LS
authors.lastname: Turkstra
authors.forename: Shari L
authors.initials: SL
authors.lastname: Wade
authors.forename: Keith O
authors.initials: KO
authors.lastname: Yeates
mesh_terms: D001930:Brain Injuries / Q000145:classification*; D002648:Child; D006801:Humans; D017063:Outcome Assessment, Health Care / Q000592:standards*; D010372:Pediatrics / Q000592:standards*; D012107:Research Design / Q000592:standards