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

• Published in: European journal of neurology Vol. 28; no. 12; pp. 4069 - 4077
• Main Authors: Kodumuri, Nishanth, Edmunds, Amy, Seidel, Amy, Fleming, Phil, Vezzetti, Alexandra, Mascari, Rachel, Kothari, Ravish, Lowe, Justin, Sen, Souvik
• Format: Journal Article
• Language: English
• Published: England John Wiley & Sons, Inc 01.12.2021
• Subjects: Assessments; Disabilities; Domains; Female; Humans; ischemic stroke; Male; Outcome Assessment, Health Care; Patient-Centered Care; Patients; patient‐centered outcome; Questionnaires; Reliability analysis; Reproducibility of Results; Stroke; Stroke - complications; stroke outcome; stroke recovery; Surveys and Questionnaires; Survival; Survivors; Validity; young stroke; patient-centered outcome; stroke recovery; stroke outcome; ischemic stroke; young stroke
• ISSN: 1351-5101; 1468-1331; 1468-1331
• DOI: 10.1111/ene.15052

Background and purpose This study was undertaken to develop a patient‐centered stroke outcome measure and initial validation of the proposed Young Stroke Questionnaire (YSQ). Methods This study assessed the reliability and discriminant validity of the YSQ. The initial questionnaire evolved from a focus group comprised of six young stroke survivors and six stroke neurologists centralized around four patient‐centered domains. To determine the reliability and discriminant validity of the YSQ, 100 young stroke survivors were recruited and provided consent. Standardized clinical assessments completed included the modified Rankin Scale (mRS), National Institutes of Health Stroke Scale, and Stroke Impact Scale. Additionally, all patients were asked to complete the patient‐centered YSQ. Results Of the 100 enrolled patients in the study (mean age ± standard deviation = 49 ± 11.3, 58% females, 53% African American, 44% White), Cronbach alpha for all domains was >0.7. Moreover, Cronbach alpha for entire questionnaire was >0.9, indicating that the scale, with four subdomains, is internally consistent and reproducible. Discriminant validity of the scale was assessed by comparing the means of each subdomain of the YSQ among healthy subjects to the groups of stroke patients as defined by the mRS. The 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). 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 four subdomains. Stroke in young patients is challenging, as it frequently effects emotional well‐being, relationships, personal identity, social interaction, and ability to work as before. Conventional stroke outcome scales based on physical assessments fail to identify the challenges faced by young stroke survivors. Young Stroke Questionnaire is a simple, reliable tool to assess the unmet needs of the young stroke population. It is validated in our cohort of young stroke patients.