Abstract Number: Esoc2026a1851 Beyond the Modified Rankin Scale: Feasibility of Online Patient-reported Outcome Measurement to Capture Long-term Stroke Recovery in Acute Stroke Studies
Year: 2026
Type: conference-abstract
Abstract: Background and aims Acute stroke trials, registries, and cohort studies commonly use the modified Rankin Scale (mRS) at three months after stroke as the primary outcome. Although successful, the mRS does not capture much detail about the recovery and is dominated by mobility. Online-administered patient-reported outcome measures (PROMs) enable the collection of detailed, patient-perspective data on stroke recovery; however, little is known about stroke patients' ability and willingness to complete them. In this study, we report our early experiences with online PROMs in two acute stroke studies. Methods Acute stroke patients participating in the DIVINE (ischemic stroke) or MEASURE (subarachnoid hemorrhage) observational cohort studies within the CONTRAST 2.0 consortium received an email-link to study-specific surveys at 3, 6, 12, or 18 months post-stroke. The validated PROM set required approximately 60 minutes to complete and comprised measures of physical, emotional, and cognitive functioning, participation, health-related quality of life, healthcare utilization, medical consumption, and work. Results To date, for DIVINE, 316 of 505 patients (63%) completed the questionnaire at 3 months and 172 of 277 (62%) at 12 months. For MEASURE, 235 of 279 invited patients (84%) completed the PROMs at 6 months, and 33 of 45 (73%) at 18 months. Overall, 93% of respondents completed the questionnaires online, and 7% on paper upon request. The vast majority of patients who completed the questionnaires answered all questions. Conclusions In acute stroke registries, online administration of PROMs during follow-up is feasible, achieving response rates of 60-80%, enabling detailed assessment of patient-reported recovery after stroke. Conflict of interest L.J. Gilhuis: Nothing to disclose. J.A. de Graaf: nothing to disclose. E.V.M. Evans: nothing to disclose. S.B. Zandvliet: nothing to disclose. M.H. Heijenbrok-Kal: nothing to disclose. P.C. Nguyen: nothing to disclose. M.H. Lahr: nothing to disclose. M. Uyttenboogaart: nothing to disclose. H.B. van der Worp: nothing to disclose. B.J. Emmer: nothing to disclose. H.D. Boogaarts: nothing to disclose. P.B. van Wijngaarden: nothing to disclose. M.D.I. Vergouwen: nothing to disclose. B. Konya: nothing to disclose. C.G.M. Meskers: nothing to disclose. R.W. Selles: nothing to disclose.
Source: European Stroke Journal
Institutions: Erasmus MC, University Medical Center Utrecht, Radboud University Nijmegen, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Rijndam Revalidatiecentrum, University Medical Center Groningen, Hanoi University of Pharmacy, Amsterdam University Medical Centers, University of Amsterdam, Northwestern University, Amsterdam UMC Location Vrije Universiteit Amsterdam
Language: English
Subfield: Rehabilitation
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $4,400
OpenAlex ID: W7160421294
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