Patient-Reported Outcome Measures (PROMs) for Acute Stroke: Rationale, Methods and Future Directions.

Abstract

Traditionally, important clinical outcomes after stroke have included survival, stroke recurrence, and the need for long-term aftercare, as well as a diverse range of measures that quantify the direct and indirect impact of stroke on patient functioning. Instruments used to describe patient function include the modified Rankin Scale (mRS)1 and the Barthel Index (BI).2 The fact that the use of the mRS in stroke patients was first published in 1957,1 and the application of the BI to stroke patients was described as early as 1967,2 serves to illustrate that the stroke community has had a long history of measuring outcomes that are meaningful to patients. Although these traditional measures of stroke outcome can be considered inherently patient-centered, there are important distinctions in how these data are assessed and recorded. Of central interest to this report is the collection of health information directly from stroke patients themselves—so-called patient-reported outcome measures (PROMs). It is important to distinguish PROMs from clinician-reported outcomes, which involve the collection of data by clinicians after observation of the patient (which may also include clinical judgment), and observer-reported outcomes which involve data collected by a third party, for example, caregiver.3 Over recent years, there has been an explosion of interest in PROMs across research, clinical care, and public health.4–6 The scope of what constitutes a PROM can vary between different organizations and reports, but they all typically include measures of functional status, well-being and health-related quality of life (HRQOL), and symptom burden7; some reports also include patient experiences of care (eg, satisfaction) and health behaviors.5 Regardless of the exact definition, the most essential feature of a PROM is the notion that it represents the status of the patient’s health that comes directly from the patient without interpretation …