![]() ![]() Spanish translations that have been standardized are noted. When possible, measures were identified that spanned a wide age range to avoid the need to change measures between childhood and adolescence. Finally, a subset of measures that could be used with infants and toddlers was included, given their unique developmental issues. The number of domains was expanded to also include measures related to academics, daily life skills/adaptive functioning, family/environment, language and communication, social cognition, and social competence/role participation. ![]() Of the original CDE domains, we included global outcome, recovery of consciousness, perceived health-related quality of life, neuropsychological impairment, physical functioning, psychological status, and TBI-related symptoms. ![]() In selecting outcome domains, the Pediatric CDE Workgroup sought to preserve the focus that was established by the original CDE Workgroup, consider outcomes at multiple levels, and select measures of import to stakeholders, scientists, and practitioners. Selection of TBI Outcome Domains and Measures Further information regarding the background of the TBI CDE initiative and the methods used by all workgroups to arrive at CDE recommendations is detailed by Miller, Duhaime, Odenkirchen, and Hicks ( in press). As with the original CDE Workgroup, physicians, neuropsychologists, psychologists, and others with specific expertise in pediatric TBI outcomes research, including physical and occupational therapists and speech-language pathologists, were recruited to participate in the Pediatric CDE Workgroup. Therefore, an additional workgroup was formed to specifically address this gap. However, during the development of the original Outcomes CDE (hereafter referred to as the “original CDE”), the failure to include measures that would be appropriate for children and infants was a notable limitation. T he purpose of the Common Data Elements (CDE) Traumatic Brain Injury (TBI) Outcomes Workgroup was to address the need for a common set of outcome measures for TBI research across agencies and populations (Thurmond et al., 2010). ![]() 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. In the second tier, supplemental measures were recommended for consideration in TBI research focusing on specific topics or populations. 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. Consistent with other Common Data Elements (CDE) Workgroups, the Pediatric TBI Outcomes Workgroup adopted the standard three-tier system in its selection of measures. 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. 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. ![]()
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