Introduction: Stroke is a leading cause of adult disability that has long-term impact on outcome of patients. The current outcome measures are felt to be inadequate in measuring the impact of stroke in young patients (≤65) in midst of managing education, career, and family.
Methods: This study assessed the reliability and discriminate validity of the young stroke questionnaire (YSQ). The development framework of the YSQ involved a two-step process. Initial feedback from stroke survivors and healthcare providers via multiple focus groups helped identify questions used to measure impact of stroke on 4 patient-centered domains: work and leisure, relationships, wellbeing, and healthcare resources. A subsequent focus group prioritized and refined items on the final YSQ. To determine the reliability and discriminate validity of YSQ, 25 young stroke survivors were consented at the Neurology Clinic. Standardized clinical assessments completed included the modified Rankin Scale (mRS), National Institutes of Health Stroke Scale (NIHSS), and the Stroke Impact Scale (SIS). Additionally, all patients were asked to complete the patient-centered questionnaire, YSQ.
Results: Of 48 ischemic stroke patients screened, 25 (Mean age ± SD = 51 ± 9.2, 36% Males, 40% African-American, 56% White) patients qualified for enrollment into the young stroke questionnaire validation study. Using Levene’s test for equality of variance to compare YSQ and standardized clinical assessments, the YSQ was more likely to detect patient-centered disabilities post stroke in the following domains: relationships (α = 0.035) and healthcare resources (α = 0.027). Reliability of the summary measure was assessed using Cronbach’s alpha and found to be high (α = 0.903), indicating that the index created by summing the 4 dimensions is internally consistent and reproducible.
Conclusions: Standardized clinical assessments are not sensitive to disabilities in young stroke survivors. When compared to standardized clinical assessments, the young stroke questionnaire is significantly capable of differentiating the young survivor perspective of the impact of stroke, specifically in area of relationships and healthcare resources.