Conceptualization of a new stroke-specific outcome measure: the stroke impact scale.

Current stroke outcome measures are unable to detect some consequences of stroke that affect patients, families, and providers. The objective of this study was to ensure the content validity of a new stroke outcome measure. This was a qualitative study using individual interviews with patients and focus group interviews with patients, caregivers, and health care professionals. Participants included 30 individuals with mild and moderate stroke, 23 caregivers, and 9 stroke experts. Qualitative analysis of the individual and focus group interviews generated a list of potential items. Consensus panels reviewed the potential items, established domains for the measure, developed item scales, and decided on mechanisms for administration and scoring. Although the participants with stroke appeared highly recovered based on scores from conventional stroke assessments (Barthel Index and NIH Stroke Scale), stroke survivors and their caregivers identified numerous persisting impairments, disabilities, and handicaps. In general, stroke survivors described themselves as only about 50% recovered and reported that they had difficulty in activities in which they were not independent. To fully assess the impact of stroke on patients, we used the results of this qualitative study to develop a new stroke-specific outcome, the Stroke Impact Scale.