A Quality-of-Life Instrument for Young Hemorrhagic Stroke Patients

Abstract

Background and Purpose —Hemorrhagic stroke has a high initial mortality rate. While survivors often recover motor function, many experience significant changes in their quality of life (QOL). Available outcome measures assess neurological impairment, disability, or handicap, yet often inadequately characterize the full impact of a stroke on patients’ lives. In this study, we develop and validate a QOL instrument specific for young patients with hemorrhagic strokes. Methods —Methodological guidelines for instrument development were initially established. Based on the content of 40 open-ended patient interviews, a 54-item instrument (HSQuale) was developed. The reliability (test-retest and internal consistency) and validity (content and construct) of HSQuale were assessed in another 71 patients (18 to 49 years of age, 63% women, 77% white), at 1 year after their hemorrhagic stroke. Comparisons were made between HSQuale and other commonly used outcome measures. Results —HSQuale demonstrated reproducibility (test-retest κ, 0.40 to 0.96) and internal consistency (Cronbach α ≥0.80 for 5 of 7 domains). HSQuale scores had broad frequency distributions (≤33% of subjects scored in any single score decile), avoided ceiling effects found for other outcome measures (Barthel Index and Short Form-36), and discriminated among clinically distinct subject groups (eg, intracerebral versus subarachnoid hemorrhage patients). Conclusions —HSQuale is a reliable and valid QOL instrument. Compared with other outcome measures, it assesses a broader range of deficits and is better able to discriminate among subgroups of hemorrhagic stroke survivors.