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An International Standard Set of Patient-Centered Outcome Measures After Stroke
Joel Salinas1, Sara M Sprinkhuizen1, Teri Ackerson1
1From the International Consortium of Health Outcomes Measurement, Cambridge, MA (J.S., S.M.S.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (J.S., L.H.S.); American Heart Association/American Stroke Association (AHA/ASA), Liberty Hospital, MO (T.A.); The Florey Institute of Neuroscience and Mental Health, Melbourne, Victoria, Australia (J.B.); UCLPartners Academic Health Science Network, Royal Free London NHS Foundation Trust, London, United Kingdom (C.D.); Division for Heart Disease and Stroke Prevention, U.S. Centers for Disease Control and Prevention, Atlanta, GA (M.G.G.); Aneurin Bevan University Health Board, Wales, United Kingdom (S.G.); University of Rochester Medical Center, NY (A.G.K.); Heart and Stroke Foundation of Canada, World Stroke Organization, Ottawa, Ontario, Canada (P.L.); Capital Medical University, Beijing Tiantan Hospital, Beijing, China (L.L.); Hospital Moinhos de Vento, National Stroke Registry, Brazilian Stroke Society, Porto Alegre, Brazil (S.C.O.M.); AHA/ASA, Dallas, TX (L.M.); Department of Clinical Sciences, Neurology, Lund University, Lund, Sweden (B.N.); Swedish Stroke Register (Riksstroke), Umeå, Sweden (B.N.); Erasmus University MC, Rijndam Rehabilitation Center, Rotterdam, The Netherlands (G.M.R.); Ontario Stroke Registry, University of Toronto, Toronto, Ontario, Canada (F.L.S.); Hotchkiss Brain Institute and Department of Clinical Neurosciences, University of Calgary, Calgary, Canada (E.E.S.); VA HSR&D Stroke QUERI, Indiana University School of Medicine, Indianapolis (L.S.W.); AHA/ASA Get With The Guidelines-Stroke Registry (L.H.S.); Paul Coverdell National Acute Stroke Registry (L.H.S.); Stroke Joint Commission (L.H.S.); and Primary and Comprehensive Stroke Center Certification Programs (L.H.S.).
Background And Purpose:
Value-based health care aims to bring together patients and health systems to maximize the ratio of quality over cost. To enable assessment of healthcare value in stroke management, an international standard set of patient-centered stroke outcome measures was defined for use in a variety of healthcare settings.
Methods:
A modified Delphi process was implemented with an international expert panel representing patients, advocates, and clinical specialists in stroke outcomes, stroke registers, global health, epidemiology, and rehabilitation to reach consensus on the preferred outcome measures, included populations, and baseline risk adjustment variables.
Results:
Patients presenting to a hospital with ischemic stroke or intracerebral hemorrhage were selected as the target population for these recommendations, with the inclusion of transient ischemic attacks optional. Outcome categories recommended for assessment were survival and disease control, acute complications, and patient-reported outcomes. Patient-reported outcomes proposed for assessment at 90 days were pain, mood, feeding, selfcare, mobility, communication, cognitive functioning, social participation, ability to return to usual activities, and health-related quality of life, with mobility, feeding, selfcare, and communication also collected at discharge. One instrument was able to collect most patient-reported subdomains (9/16, 56%). Minimum data collection for risk adjustment included patient demographics, premorbid functioning, stroke type and severity, vascular and systemic risk factors, and specific treatment/care-related factors.
Conclusions:
A consensus stroke measure Standard Set was developed as a simple, pragmatic method to increase the value of stroke care. The set should be validated in practice when used for monitoring and comparisons across different care settings.
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