Evaluation of measures used to assess quality of life after stroke

BACKGROUND AND PURPOSE: Assessment of quality of life (QOL) after stroke is becoming common with the recognition that evaluation of treatment should include quality as well as quantity of survival. This article will outline the main conceptual and methodological issues in QOL assessment, highlight advantages and disadvantages of measures used in stroke QOL research, and discuss some unresolved issues. SUMMARY OF REVIEW: We undertook a MEDLINE search using the keywords "stroke" and "quality of life" and reviewed 3 key texts on QOL measurement in stroke. Fifteen generic and 10 condition-specific measures used to assess QOL in stroke were identified and evaluated with the following criteria: reliability, validity, responsiveness, precision, acceptability, suitability for proxy respondents, mode of administration, and use of patient-centered approaches in development. Domains covered and level of comprehensiveness varied widely between generic and stroke-specific measures. No stroke-specific instruments used patient-centered approaches in their development. Four stroke-specific measures (Frenchay Activities Index, Niemi QOL scale, Ferrans and Powers QOL Index-Stroke Version, and Stroke-Adapted Sickness Impact Profile SA-SIP30]) provided evidence of reliability and validity. CONCLUSIONS: The need remains for a patient-centered, psychometrically robust, stroke-specific QOL measure. Patients should be involved in each stage of instrument development. Caution is needed in the selection of an instrument to measure QOL after stroke. Although the Ferrans and Powers QOL Index-Stroke Version, Niemi QOL scale, SA-SIP30, and Sickness Impact Profile come closest to satisfying many of the criteria outlined in this article, the selection of any individual instrument depends on the specific goals and constraints of a particular study.