Added Value of Patient‐Reported Outcome Measures in Stroke Clinical Practice

BACKGROUND: There is uncertainty regarding the clinical utility of the data obtained from patient‐reported outcome measures (PROMs) for patient care. We evaluated the incremental information obtained by PROMs compared to the clinician‐reported modified Rankin Scale (mRS). METHODS AND RESULTS: This was an observational study of 3283 ischemic stroke patients seen in a cerebrovascular clinic from September 14, 2012 to June 16, 2015 who completed the routinely collected PROMs: Stroke Impact Scale‐16 (SIS‐16), EQ‐5D, Patient Health Questionnaire‐9, PROMIS Physical Function, and PROMIS fatigue. The amount of variation in the PROMs explained by mRS was determined using r(2) after adjustment for age and level of stroke impairment. The proportion with meaningful change was calculated for patients with ≥2 visits. Concordance with change in the other scales and the ability to discriminate changes in health state as measured by c‐statistic was evaluated for mRS versus SIS‐16. Correlation between PROMs and mRS was highest for SIS‐16 (r=−0.64, P<0.01). The r(2) ranged from 0.11 (PROMIS fatigue) to 0.56 (SIS‐16). Change in scores occurred in 51% with mRS and 35% with SIS‐16. There was lower agreement and less ability to discriminate change in mRS than in SIS‐16 with change in the other measures. CONCLUSIONS: PROMs provide additional valuable information compared to the mRS alone in stroke patients seen in the ambulatory setting. SIS‐16 may have a better ability to identify change than mRS in health status of relevance to the patient. PROMs may be a useful addition to mRS in the assessment of health status in clinical practice.