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

• Published in: Cancer 2019-04, Vol.125 (8), p.1350-1356
• Main Authors: Papadakos, Janet K., Charow, Rebecca C., Papadakos, Christine J., Moody, Lesley J., Giuliani, Meredith E.
• Format: Article
• Language: English
• Subjects: access; and evaluation; Cancer; cancer care facilities; Comprehension; Domains; Emotions; health care quality; Health Literacy; health services accessibility; health status; hospital oncology service; Humans; Language; Neoplasms - therapy; Oncology; Pain; patient outcome assessment; Patient Reported Outcome Measures; Quality of Life; surveys and questionnaires
• ISSN: 0008-543X; 1097-0142
• DOI: 10.1002/cncr.31928

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. More than half of the most commonly used cancer patient–reported outcome measures (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.