Recommendations for the use of common outcome measures in pediatric traumatic brain injury research

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.

Contributors

McCauley, S. R. Wilde, E. A. Anderson, V. A. Bedell, G. Beers, S. R. Campbell, T. F. Chapman, S. B. Ewing-Cobbs, L. Gerring, J. P. Gioia, G. A. Levin, H. S. Michaud, L. J. Prasad, M. R. Swaine, B. R. Turkstra, L. S. Wade, S. L. Yeates, K. O.

Publication

Journal: J Neurotrauma
Volume: 29
Issue: 4
Pages: 678 - 705
Year: 2012
DOI: 10.1089/neu.2011.1838

Further Study Information

Current Stage: Not Applicable
Date: March 2010
Funding source(s): This project was jointly supported by the National Institutes of Health (National Institute of Neurological Disorders and Stroke; NIH/NINDS) and the United States Department of Education/National Institute on Disability and Rehabilitation Research (DOE/NIDRR).

Health Area

Disease Category: Neurology

Disease Name: Brain injury (traumatic)

Target Population

Age Range: 1 - 18

Sex: Either

Nature of Intervention: Not specified

Stakeholders Involved

- Clinical experts
- Researchers

Study Type

- Recommendations made
- Recommendations for outcome measures (measurement/how)

Method(s)

- Consensus meeting
- Other

Other: conference calls and email exchanges

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