Article
Quality of life after traumatic brain injury: a review of research approaches and findings1☆,

Presented in part at “State of the Science Conference on Community Integration of Individuals With Traumatic Brain Injury,” April 24–26, 2002, Washington, DC.
https://doi.org/10.1016/j.apmr.2003.08.119Get rights and content

Abstract

Dijkers MP. Quality of life after traumatic brain injury: a review of research approaches and findings. Arch Phys Med Rehabil 2004;85(4 Suppl 2):S21–35.

Objectives

To assess existing knowledge of quality of life (QOL) of people with traumatic brain injury (TBI) and to make recommendations for methodologic and substantive research in this area.

Data sources

Published research on QOL of persons with TBI, identified from databases, ancestry search, and the author’s files.

Study selection

Empirical, theoretical, and methodologic articles relevant to 5 areas: QOL as achievements, QOL as subjective well-being (SWB), QOL as utility, QOL experienced, and QOL measurement instruments applicable to TBI or specifically developed for people with this impairment.

Data extraction

Selection of QOL indicators, with focus on TBI versus non-TBI differences.

Data synthesis

Studies of QOL as achievements show that in almost all areas, people with TBI score lower than they did before injury and lower than comparisons groups. There are limited gaps in our knowledge in this area. Research into QOL as SWB shows that after TBI, people typically report, for example, somewhat lower life satisfaction and affect than do comparison groups, and that injury severity is not necessarily a predictor of SWB. There are almost no studies of QOL as utility of life after TBI.

Conclusions

Major research recommendations include: exploring the ability of TBI subjects to self-report; determining the salience of domains of life for this group; developing utility instruments that are sensitive to differences in deficits in cognition and other health and life domains; and doing qualitative studies that explore the experience of QOL.

Section snippets

QOL as achievements

What is important to you for QOL? People respond to the question in terms of broad, directly experienced, and “functional” material and immaterial goods, such as good health, a sharp mind, and financial security. HRQOL studies and social indicators research have identified those domains of life that most people consider important to their QOL. Based on thousands of interviews using the critical incident technique, Flanagan30, 31 developed a list of 15 domains of life that can be used to

QOL as SWB

In the formulation used here, SWB is the end result of weighing what one has and is (defined as broadly as possible) against one’s standards and expectations. These standards may be absolute, comparative with oneself (eg, “prior to my injury”), or relative to others. There is no claim that making these comparisons is a conscious process; in fact, only life satisfaction is considered to be the result of such a formal accounting, and many people may never evaluate their QOL unless asked to do so

QOL as utility

An extensive literature discusses methods of deriving utilities and other methodologic issues in health status preference studies and the application of those methods.7, 94, 95, 96, 97 However, only 1 study was found that used a utility QOL measure with a sample with TBI. Taylor et al98 evaluated the benefit of very early decompressive craniectomy in children with severe brain injury, and used the Mark 1 Health Status Utility to assess outcomes at about 6 months postinjury. Of the 13 children

QOL experienced

The literature on HRQOL, QOL, and other outcomes after TBI addresses losses, burdens, and deficits exclusively, tempered by success stories of treatment, training, and development of compensatory skills that enable those with TBI to regain, at least partially, what was lost because of the injury and its cascade of effects. The data on SWB suggest that most subjects with TBI perceive the injury and its direct and indirect consequences negatively, even after treatment and rehabilitation. In terms

Research needs

The National Institutes of Health (NIH) consensus conference on rehabilitation of persons with TBI105 made 2 broad recommendations concerning QOL: (1) QOL predictors for persons with TBI, their families, and significant others should be studied, and (2) generic HRQOL assessment instruments must be validated for use with persons with TBI and TBI-specific instruments must be developed and validated.

Substantive issues (recommendation 1) cannot be studied without development of better QOL measures

Conclusions

TBI, especially if moderate or severe in nature, has many effects that threaten QOL. The 3 conceptualizations of QOL offer different perspectives on the nature of the QOL decrement that may result. Knowledge of the impacts of injury on QOL as achievements is extensive, although some areas have not been researched adequately. QOL as subjective well-being has often been studied, although more is known about life satisfaction than about happiness and other mood states. Although the life

Acknowledgements

Wayne Gordon, PhD, prepared the profiles on which table 5 is based. Ava Dorfman did literature searches, as well as edited and formatted the manuscript.

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    ☆

    Supported in part by the National Institute on Disability and Rehabilitation Research, Office of Special Education Services, US Department of Education (grant nos. H133G990221, H133A020501, H133B980013).

    1

    No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors(s) or upon any organization with which the author(s) is/are associated.

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    Copyright © 2004 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.