Development and initial validation of a patient centered stroke outcome measure in young stroke survivors.

Abstract

OBJECTIVE\nTo develop a patient centered stroke outcome measure and initial validation of the proposed Young Stroke Questionnaire (YSQ).\n\n\nMETHODS\nThis study assessed the reliability and discriminate validity of the YSQ. The initial questionnaire evolved from a focus group comprised of 6 young stroke survivors and 6 stroke neurologists centralized around 4 patient-centered domains. To determine the reliability and discriminate validity of YSQ, 100 young stroke survivors were consented. Standardized clinical assessments completed included the modified Rankin Scale (mRS), National Institutes of Health Stroke Scale (NIHSS), and the Stroke Impact Scale. Additionally, all patients were asked to complete the patient-centered questionnaire, YSQ.\n\n\nRESULTS\nOf the 100 enrolled patients in the study (mean age ± SD = 49 ± 11.3, 58% females, 53% African American, 44% White), the Cronbach s alpha for all domains was greater than 0.7. Moreover, the Cronbach s alpha for entire questionnaire was >0.9 indicating the scale with 4 subdomains is internally consistent and reproducible. Discriminant validity of the scale was assessed by comparing the means of each subdomain of YSQ among healthy subjects to the groups of stroke patients as defined by the mRS. YSQ was able to differentiate subjects with good outcome (mRS 0-1) from subjects with varying degree of disability as defined by the mRS (p =0.026).\n\n\nCONCLUSIONS\nStandardized clinical assessments are not sensitive to disabilities in young stroke survivors. When compared to standardized clinical assessments, the YSQ is significantly capable of differentiating the young survivor perspective of the impact of stroke in all four subdomains.