Abstract
Obtaining delayed functional outcomes such as the modified Ranking score (mRS) after stroke is challenging in clinical practice, often resulting in missing data. Self-reported outcomes are an alternative to functional outcome collection, but their reliability and accuracy are not well-established Methods: In this subgroup analysis of the Mild and Rapidly Improving Stroke Study (MaRISS), we aimed to test the feasibility and reliability of the MaRISS Patient Reported Outcome (PRO) survey tool for obtaining delayed functional outcomes in low (0-5) National Institute of Health Stroke Scale ischemic stroke, particularly the modified Rankin Score (mRS), by assessing its inter-rater reliability with a score calculated by a clinician through a structured telephone interview. Other scores were compared as secondary outcomes. 125 surveys were distributed between January 2017 and July 2018. The tool consisted of an online survey aiming to collect information regarding the patient's functional status 90 days after stroke including the mRS (utilizing the mRS 9-Q version), Stroke Impact Scale-16 (SIS), Barthel Index (BI), European Quality of Life-5D-5L (EQ-Index). All participants also completed these scales administered by trained personnel through a structured telephone interview. Cohen's weighted kappa coefficients (κ) with 95% confidence intervals (CI) were calculated to assess the reliability of the PRO Tool Results: Of 125 surveys sent, 55/125 (46.4%) participants opened and started the survey but only 44/125 (36.8%) completed it entirely (mean age 62±12.5, 54.6% female, white 79.6%, NIHSS 2.3±1.8, ischemic stroke 84%, 16% TIA). 52 subjects completed both the online mRS 9-Q PRO and the telephone version (Table). The weighted kappa for the comparison of PRO mRS and the clinician-performed mRS was moderate [κ 0.53, SE 0.10; 95% CI (0.3-0.7)] as well as for the SIS (κ 0.43, SE 0.09) and EQ-Index (κ 0.40, SE 0.10) scores, whereas for BI was fair (κ 0.32, SE 0.15) Discussion: Engaging participants after hospital discharge remains difficult. Although participant completion rates for self-reported outcomes were low, the MaRISS PRO Tool showed moderate reliability. These findings should be confirmed in larger samples with a focus on improving participant engagement
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