Domains, Trends, and Uptake of Common Data Elements in Intervention Studies Focused on Recovery of Consciousness in Severe Brain Injury from 1986 to 2020: A Scoping Review

Jennifer A. Weaver, Department of Occupational Therapy, College of Health and Human Sciences, Colorado State University, Fort Collins, CO; Department of Clinical Research & Leadership, School of Medicine and Health Sciences, The George Washington University, Washington, District of Columbia. Electronic address: jen.weaver@colostate.edu.
Alison M. Cogan, Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, Ostrow School of Dentistry, University of Southern California, Los Angeles, CA. Electronic address: alison.cogan@chan.usc.edu.
Vera Pertsovskaya, Department of Neurology, Weill Cornell Medical College, New York, NY. Electronic address: elm9224@nyp.org.
Parie Bhandari, Hubert Department of Global Health, Rollins School of Public Health, Emory University, Atlanta, GA. Electronic address: parie.bhandari@alumni.emory.edu.
Bint-E Z. Awan, Department of Medicine, School of Medicine and Health Sciences, The George Washington University, Washington, District of Columbia. Electronic address: bzwan@gwu.edu.
Sara Lewis, National Rehabilitation Hospital, Washington, District of Columbia.
Angela Hartman, Shepherd Center SHARE Military Initiative, Atlanta, GA. Electronic address: angela.hartman@shepherd.org.
Kristen Maisano, Department of Occupational Therapy, Henrietta Schmoll School of Health Sciences, St. Catherine University, St. Paul, MN. Electronic address: KLMaisano@stkate.edu.
Tom Harrod, Himmelfarb Health Sciences Library, The George Washington University, Washington, District of Columbia. Electronic address: tph@gwu.edu.

Document Type

Journal Article

Publication Date

8-18-2025

Journal

Archives of physical medicine and rehabilitation

DOI

10.1016/j.apmr.2025.07.021

Keywords

Common Data Element; Disorders of Consciousness; Outcomes; Traumatic Brain Injury

Abstract

OBJECTIVE: The primary purpose of our scoping review was to evaluate the range and typology of primary clinical outcome assessments used in intervention studies promoting recovery of consciousness for patients with disorders of consciousness (DoC). A secondary aim was to examine the extent to which the introduction of common data elements (CDE) has reduced the heterogeneity of primary clinical outcome assessments in DoC studies. DATA SOURCES: We searched for articles across five databases: Cochrane, Embase, PsycInfo, PubMed, and Scopus. STUDY SELECTION: We selected articles that focused on facilitating recovery of consciousness among adults with DoC following severe traumatic brain injury. DATA EXTRACTION: We extracted the study year, primary clinical outcome assessment, and funding source. DATA SYNTHESIS: We classified the primary clinical outcome by International Classification of Functioning, Disability and Health (ICF) domain and CDE status. 75 primary clinical outcome assessments were extracted from 307 included articles; 45 primary clinical outcome assessments (60%) aligned with the ICF Body Function domain. The proportion of articles with US federal funding that reported a CDE as the clinical outcome assessment did not differ by year published. CONCLUSION: Implementation of CDEs in 2010 did not substantively change the utilization of clinical outcome assessments that are CDEs because these were already more likely to be reported than non-CDEs. Overall, the wide variation in primary clinical outcome assessments utilized in intervention studies facilitating recovery of consciousness limits the ability to conduct meta-analyses, which are needed to increase the strength of evidence for DoC interventions.

Department

Clinical Research and Leadership

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