Activity-related quality of life in rehabilitation and traumatic brain injury

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Abstract

Johnston MV, Miklos CS. Activity-related quality of life in rehabilitation and traumatic brain injury. Arch Phys Med Rehabil 2002;83 Suppl 2:S26-38. Objectives: To review approaches to assessment of quality of life (QOL) outcomes in rehabilitation, focusing particularly on traumatic brain injury (TBI), and to introduce the concept of activity-related QOL. Data Sources: A conceptual review, based on extensive searches of MEDLINE, PsychInfo, and other information sources. Study Selection: Studies indexed under QOL and brain injury. Data Extraction: Literature search on key words quality of life and traumatic brain injury. Data Synthesis: Past research in rehabilitation and TBI has concentrated largely on assessment of function or activity. Although research on QOL after TBI remains limited, many studies have made inferences about QOL without actually assessing it. Persons with TBI experience serious long-enduring problems with QOL. Progress has been made in measurement of QOL and understanding of predictors of QOL after TBI. Conclusions: Future research in rehabilitation would do well to consider not only activity outcomes but also the affective quality of everyday life, and the connections between the two. Measures of activity-related QOL may provide a more sensitive, valid, and useful evaluation of rehabilitative therapies than other approaches. Further research is needed to improve measurement and interpretation of QOL assessments. By assessing both objective and subjective features of outcomes, outcomes assessment becomes more complete and potentially more useful. © 2002 by the American Congress of Rehabilitation Medicine

Section snippets

QOL: Definitions and conceptualizations

QOL is an important, possibly the ultimate outcome measure, but definitions of QOL have varied. One group of definitions emphasizes the congruence between expectations or aspirations and actual functioning, as perceived by the person.3, 5, 4 “Subjective QOL can be defined as the fit between a person's expectations and his or her achievements, as experienced by the person,...”6(p7-8) Other definitions compare patients' “current level of functioning [with] what they perceive to be possible or

Approaches to assessment of QOL in rehabilitation

QOL is based on a person's subjective experience and is best judged according to personal standards. At the same time, much of life involves the experience of doing activities, and activities are largely observable. QOL assessments have commonly included aspects that are objective15 or at least suggest a possible observable basis, and in any case purely verbal expressions of QOL can be difficult to interpret in the absence of anything more stable or objective. We will review both objective,

Scales used in TBI QOL research

Various scales have been used to assess QOL among persons with TBI. Table 2 lists specifics about these scales. We also categorized the scales as reflecting subjective or affective well-being, mingling both objective and subjective, or as involving subjective weighting of items. The table is based on a comprehensive literature search of QOL and related terms (eg, life satisfaction, well-being) in articles that are indexed under brain injuries. The categorization of the study as reflecting QOL

Discussion

QOL needs to be used more frequently as an outcome measure. Although rehabilitation should not give up its emphasis on objective function, increased attention to QOL will strengthen rehabilitation. Improvements in QOL assessment, however, are needed if QOL research is to realize its potential of allowing rehabilitation to document its true value and to enable us to validate intervention strategies that maximize the value of rehabilitation to persons served. Better measures of QOL will give us a

Conclusion

Rehabilitation research needs to address both functional and affective QOL; improved measures of them are needed. Such research will improve our ability to gauge the value of rehabilitation. Study of activity-related QOL and research on methods of weighting functional gains by their likely impact on the individual's QOL should enable us to test methods of targeting rehabilitative interventions to maximize value to persons served. It may be possible to improve the value of rehabilitation to

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    Copyright © 2002 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.