LAUSR

Introduction: Stroke is a leading cause of disability affecting patients and their caregivers. Current outcome measures inadequately quantify the impact of stroke in young patients (≤65) in terms of managing education, career, and family. Methods: This study assessed the reliability and discriminate validity of the Young Stroke Questionnaire (YSQ) to further build upon the knowledge and understanding of young stroke patients and the specific needs for management and long-term outcomes relevant to young stroke survivors. The initial questionnaire evolved from a focus group comprised of 6 young stroke survivors and 6 stroke neurologists centralized around 4 patient-centered domains: work and leisure, relationships, wellbeing, and healthcare resources. To determine the reliability and discriminate validity of YSQ, 100 young stroke survivors were consented at the Neurology clinic. Standardized clinical assessments completed included the modified Rankin Scale (mRS). Additionally, all patients were asked to complete the patient-centered questionnaire, YSQ. Results: We enrolled 100 patients (Mean age ± SD = 49.2 ± 11.7, 42 Males, 53% African-American, 44% White) into the YSQ validation study. Cronbach’s α coefficients for the four domains and the total scale were calculated to measure the internal consistency of the YSQ. The α coefficients were found to be high (work & leisure α = 0.88, relationships α = 0.82, wellbeing α= 0.84, healthcare resources α= 0.75), indicating the scale with 4 subdomains is internally consistent and reproducible. The 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 healthy subjects from subjects with varying degree of disability, as defined by the modified Rankin scale ( work and leisure p< 0.0001, relationships p< 0.0001, wellbeing p< 0.0001, Healthcare resources p= 0.017) Conclusions: Standardized 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 the four subdomains.