Outcome instruments in moderate-to-severe adult traumatic brain injury: recommendations for use in psychosocial research

ABSTRACT

Background: Traumatic brain injury (TBI) can reduce psychosocial functioning, causing relationship, family, and employment difficulties. The present study by Moving Ahead: Centre for Research Excellence (CRE) in Brain Recovery aimed to identify a set of adult outcome instruments for moderate-to-severe TBI psychosocial research.

Procedure: A review of 115 instruments (identified through nomination, literature search, and international expert opinion) was conducted over a 15-month period. Eleven psychosocial areas were examined: Global Outcome, Communication, Social Cognition, Behavioural and Executive Function, Other Neuropsychological Functioning, Psychological Status, TBI-related Symptoms, Activities and Participation, Support and Relationships, Sense of Self, and Health-related Quality of Life. Individual instruments were considered against selection guidelines, and specific measures that best met the guidelines were identified as core (common across all studies), supplemental (dependent on study type) or emerging.

Results: The final recommendations, organised in accordance with the World Health Organisation’s International Classification of Functioning taxonomy, comprised 56 instruments for use in early recovery, outcome, and intervention studies.

Conclusion: These recommendations provide a coherent framework along with identified outcome instruments to guide psychosocial research in moderate-to-severe TBI. Adherence to the recommendations will enable data-pooling and comparison across studies and research settings facilitating consistent measurement across the lifespan.

KEYWORDS:

• Traumatic brain injury
• psychosocial
• outcome assessment
• remediation
• research
• recommendations

Acknowledgements

We would like to express our sincere thanks to the following postdoctoral research fellows for their time with the preparation of the outcome instrument briefs: Dr Kimberley Docking and Dr Emmah Doig. We would also like to thank Francesca Hill and Melinda Drew for their invaluable administrative assistance for this project. We would like to thank the following members of the distinguished Expert Advisory Board for their time in reviewing and providing feedback on the recommendations: Professor Barbara Wilson, Professor John Whyte, Professor James Malec, Professor Jonathan Evans, Professor Lyn Turkstra, Professor Shari Wade, Professor Tessa Hart, Professor Sureyya S. Dikmen, and Dr Mary R.T. Kennedy.

Disclosure statements

The following authors report a financial conflict of interest as an author or co-author of assessment instruments recommended by the Workgroup from which royalty income is/will be generated.

Skye McDonald – The Awareness of Social Inference Test

Additional instruments recommended that are authored by the Moving Ahead Working Group although are available in the public domain include the following. Note these authors did not contribute to the discussion of the instrument’s inclusion in the recommendations.

Robyn Tate – Sydney Psychosocial Rehabilitation Scale and the Care and Needs Scale.

Jennifer Fleming – Self-Awareness of Deficits Interview

Jennie Ponsford – Brain Injury Questionnaire on Sexuality

Jacinta Douglas – La Trobe Communication Questionnaire

ORCID

Cynthia A. Honan http://orcid.org/0000-0001-5735-4270

Skye McDonald http://orcid.org/0000-0003-0723-6094

Tamara Ownsworth http://orcid.org/0000-0003-1835-7094

Leanne Togher http://orcid.org/0000-0002-4518-6748

Jennifer Fleming http://orcid.org/0000-0002-5603-2410

Vicki Anderson http://orcid.org/0000-0001-5233-3147

Angela Morgan http://orcid.org/0000-0003-1147-7405

Jacinta Douglas http://orcid.org/0000-0003-0940-6624

Travis Wearne http://orcid.org/0000-0002-7565-9163

Jennie Ponsford http://orcid.org/0000-0003-0430-125X

Additional information

Funding

The Moving Ahead CRE is funded by the National Health and Medical Research Council (NHMRC) Centre for Research Excellence grant for the period 2012–2017.