Evaluating cancer patient-reported outcome measures: Readability and implications for clinical use

Abstract

Background: The benefits of patient-reported outcome measures (PROMs) are well known; however, their readability has come into question because multiple PROMs have been found to be incomprehensible to patients. This is a critical safety and equity consideration because PROMs are increasingly being integrated into routine clinical practice. A key strategy for promoting patient comprehension is the use of plain language. The aim of this study was to determine whether PROMs routinely used in the cancer setting meet plain-language best practices.

Methods: To report the plain-language level of each PROM, readability (Fry Readability Graph, Simple Measure of Gobbledygook, Flesch Reading Ease, and FORCAST) and understandability assessments (Patient Education Materials Assessment Tool [PEMAT] for Printable Materials) were performed. PROMs at grade level 6 or lower and with PEMAT scores greater than 80% were considered to meet plain-language best practices. PROMs were divided into 4 domains (physical, emotional, social, and quality of life) and 17 dimensions (eg, pain was a dimension of the physical domain). A subanalysis was conducted to determine whether specific domains and dimensions were more likely to adhere to plain-language best practices.

Results: More than half of the 45 PROMs evaluated (n = 33 [73%]) had a grade level higher than 6. Understandability scores ranged from 29% to 100%. The majority of the PROMs that did not meet plain-language best practices were within the physical and emotional domains and focused on the patient's symptom experience.

Conclusions: This evaluation shows that more than half of the most commonly used cancer PROMs do not meet plain-language best practices. Practice implications include the necessity for plain-language assessment during the PROM validation process, the consideration of plain language in PROM selection, and plain-language review and editing of low-scoring PROMs.

Keywords: access; and evaluation; cancer care facilities; comprehension; health care quality; health literacy; health services accessibility; health status; hospital oncology service; patient outcome assessment; patient-reported outcome measures; surveys and questionnaires.