Patient interpretations vary for questions in the Patient-Reported Outcomes Measurement Information System Upper Extremity.

The Patient-Reported Outcomes Measurement Information System Upper Extremity (PROMIS-UE) is frequently used in research/clinical care, but how it is understood by patients is unknown. We conducted a qualitative study including 12 cognitive interviews with patients with hand/upper extremity conditions and those purposively sampled for mixed literacy. Using framework analysis, we identified six themes total: difficulty answering questions due to insufficient information; uncertainty about whether to respond with the ability to perform the task with the injured extremity alone, either the injured or healthy extremity, or both; lack of experience doing certain tasks; uncertainty about whether to answer questions based on ability to perform the task with or without adaptive techniques; answering questions based on limitations not related to upper extremity function; and uncertainty regarding whether to answer questions on the basis of ability or pain. This study demonstrates the challenges in completing questionnaires and that variability may limit the reliability, validity and responsiveness of the PROMIS-UE.