The Australian Traumatic Brain Injury Initiative: Review and Recommendations for Outcome Measures for Use With Adults and Children After Moderate-to-Severe Traumatic Brain Injury

Authors

Jennie L. Ponsford, Monash-Epworth Rehabilitation Research Centre
Amelia J. Hicks, Monash-Epworth Rehabilitation Research Centre
Matthew K. Bagg, The Faculty of Health Sciences
Ruby Phyland, Monash-Epworth Rehabilitation Research Centre
Sarah Carrier, Monash-Epworth Rehabilitation Research Centre
Amelia C. James, Monash-Epworth Rehabilitation Research Centre
Natasha A. Lannin, Faculty of Medicine, Nursing and Health Sciences
Nick Rushworth, Brain Injury Australia
Terence J. O’Brien, Faculty of Medicine, Nursing and Health Sciences
Peter A. Cameron, Faculty of Medicine, Nursing and Health Sciences
D. Jamie Cooper, The Alfred
Regina Hill, Regina Hill Effective Consulting Pty. Ltd.
Belinda J. Gabbe, The Alfred
Melinda Fitzgerald, The Faculty of Health Sciences
Tara Alexander, Faculty of Business and Law
Vicki Anderson, Royal Children's Hospital, Melbourne
Ana Antonic-Baker, Faculty of Medicine, Nursing and Health Sciences
Elizabeth Armstrong, Edith Cowan University
Franz E. Babl, Murdoch Children's Research Institute
Zsolt J. Balogh, The University of Newcastle, Australia
Karen M. Barlow, Children’s Health Queensland
Judith Bellapart, Royal Brisbane and Women's Hospital
Niranjan Bidargaddi, The College of Medicine and Public Health
Erika Bosio, The Harry Perkins Institute of Medical Research
Peter Bragge, Monash University
Michael Bynevelt, The University of Western Australia
Karen Caeyenberghs, Deakin University
Jacquelin Capell, Faculty of Business and Law
Kevin E.K. Chai, The Faculty of Health Sciences

Publication Name

Neurotrauma Reports

Abstract

The Australian Traumatic Brain Injury Initiative (AUS-TBI) aims to select a set of measures to comprehensively predict and assess outcomes following moderate-to-severe traumatic brain injury (TBI) across Australia. The aim of this article was to report on the implementation and findings of an evidence-based consensus approach to develop AUS-TBI recommendations for outcome measures following adult and pediatric moderate-to-severe TBI. Following consultation with a panel of expert clinicians, Aboriginal and Torres Strait Islander representatives and a Living Experience group, and preliminary literature searches with a broader focus, a decision was made to focus on measures of mortality, everyday functional outcomes, and quality of life. Standardized searches of bibliographic databases were conducted through March 2022. Characteristics of 75 outcome measures were extracted from 1485 primary studies. Consensus meetings among the AUS-TBI Steering Committee, an expert panel of clinicians and researchers and a group of individuals with lived experience of TBI resulted in the production of a final list of 11 core outcome measures: the Functional Independence Measure (FIM); Glasgow Outcome Scale-Extended (GOS-E); Satisfaction With Life Scale (SWLS) (adult); mortality; EuroQol-5 Dimensions (EQ5D); Mayo-Portland Adaptability Inventory (MPAI); Return to Work /Study (adult and pediatric); Functional Independence Measure for Children (WEEFIM); Glasgow Outcome Scale Modified for Children (GOS-E PEDS); Paediatric Quality of Life Scale (PEDS-QL); and Strengths and Difficulties Questionnaire (pediatric). These 11 outcome measures will be included as common data elements in the AUS-TBI data dictionary. Review Registration PROSPERO (CRD42022290954).

Open Access Status

This publication may be available as open access

Volume

5

Issue

1

First Page

387

Last Page

408

Funding Number

ID2008223