An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort

Qual Life Res. 2024 May;33(5):1267-1274. doi: 10.1007/s11136-024-03600-8. Epub 2024 Mar 5.

Abstract

Purpose: In this study, we evaluated readability and understandability of nine French-language Patient-Reported Outcome Measures (PROMs) that are currently used in a contemporary longitudinal cohort of breast cancer survivors as part of an effort to improve equity in cancer care and research.

Methods: Readability of PROMs was assessed using the Flesh Reading Ease Score (FRES), the Gunning's Fog Index (FOG), and the FRY graphics. Readability was considered ideal if mean score ≤ 6th-grade level and acceptable if between 6th and 8th grade. Understandability was evaluated using the Patient Education Materials Assessment Tool and defined as ideal if PEMAT ≥ 80%. The Evaluative Linguistic Framework for Questionnaires (ELF-Q) provided additional qualitative elements to assess understandability. Plain-language best practice was met if both readability and understandability were ideal.

Results: None of the 9 PROMs evaluated had ideal readability scores and only 1 had an acceptable score. Understandability ranged from 55% to 91%, and only 3 PROMs had ideal scores. ELF-Q identified points for improvement in several understandability dimensions of the PROMs. None of the instruments met the definition of plain-language best practice.

Conclusion: None of the studied PROMs met the standards of readability and understandability. Future development and translation of PROMs should follow comprehensive linguistic and cultural frameworks to ensure plain-language standards and enhance equitable patient-centered care and research.

Keywords: PROMs; PROs; Patient-reported outcome measures; Readability; Survivorship; Understandability.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Breast Neoplasms / psychology
  • Cancer Survivors / psychology
  • Cohort Studies
  • Comprehension*
  • Female
  • Health Literacy
  • Humans
  • Longitudinal Studies
  • Middle Aged
  • Patient Reported Outcome Measures*
  • Quality of Life
  • Surveys and Questionnaires
  • Survivorship