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 by the clinician or anyone else.4 As such PROMs have the unique feature of describing health status from the viewpoint of the patient. This definition of PROMs holds great promise in terms of improving the quality and efficiency of healthcare.5 Although PROMs are not new to the stroke community, the wider implementation of PROMs into clinical stroke practice with the goals of improving patient outcomes and quality of care,4,5 promoting shared decision-making, and making systems-level comparisons to promote value in health care8 are new. Because this broader application of PROMs is so recent, evidence of the validity of this approach, for example, the degree to which a specific PROM reflects the quality of care, is still lacking.

The goals of this article are to describe the rationale for the development and implementation of PROMs in stroke care and research. We include a brief overview of the methodological principles for developing PROMs, an inventory of currently available PROMs for use in stroke patients, a review of the practical issues related to data collection, and the application of stroke PROMs to clinical practice and performance measurement. Recommendations for future work to develop, test, and implement PROMs in stroke patients are also provided.