An International Standard Set of Patient-Centered Outcome Measures After Stroke

TLDR

Value‑based health care seeks to align patients and health systems to maximize quality relative to cost, and the proposed outcome set should be validated in practice for monitoring and cross‑setting comparisons. The study defined an international standard set of patient‑centered stroke outcome measures to assess healthcare value across diverse settings. A modified Delphi process with an international panel of patients, advocates, and stroke specialists reached consensus on preferred outcome measures, target populations, and baseline risk‑adjustment variables. The consensus set recommends assessing patients with ischemic stroke or intracerebral hemorrhage (with optional TIA), covering survival, disease control, acute complications, and a comprehensive suite of patient‑reported outcomes at 90 days—one instrument captures 56 % of subdomains—and includes minimum data for risk adjustment, serving as a simple, pragmatic tool to enhance stroke care value.

Abstract

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.