Use of Patient-Reported Outcomes Measurement Information System Measures in Clinical Research in Patients With Stroke: A Systematic Literature Review.
Henk J Arwert, Daniella M Oosterveer, Jan W Schoones and 2 others
PMID 35756978WHAT IT FOUND
PROMIS measures are widely used in stroke research but rarely follow international guidelines for timing or reporting.
Most data comes from US outpatient clinics with high-functioning patients, and inconsistent scoring directions make comparing results across studies impossible.
Key findings
01Only 6 of the 27 included studies reported PROMIS outcomes in line with the Stroke Standard Set (PROMIS GH at 3-month follow-up).
02The majority of included studies (74%) used hospital-based populations where patients attended regular outpatient care, likely excluding those with more severe disability who could not attend.
03PROMIS Physical Function and Satisfaction With Social Roles scores were reported inconsistently, with some studies reversing the scale direction, which hampers comparison.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review excludes studies that did not report actual outcome data, potentially missing methodological insights from psychometric validation studies. The majority of participants were high-functioning (median mRS 1) and able to attend outpatient appointments, which limits the applicability of the findings to patients with severe stroke or those who do not attend follow-up care. Significant heterogeneity in study designs, follow-up times, and data processing prevented a meta-analysis or systematic comparison of psychometric properties. Inconsistent reporting of PROMIS scores (e.g., reversed scales, non-normalized totals) in the included studies makes it difficult to draw unified conclusions about patient outcomes across the literature.
The easy way to misread this
Do not assume that PROMIS scores from these studies are directly comparable to each other or to your own clinical data. The review found that several studies reversed the scoring direction for Physical Function and Social Roles, and one used a non-standard total score, meaning a 'higher' number might indicate worse function in some papers and better function in others.