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

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

Camila Chiodi  1 , Jonathan Epstein  2   3   4 , Johanna Arvis  5 , Elise Martin  5 , Aude Barbier  5 , Antonio Di Meglio  5 , Emma Gillanders  5 , Guillemette Jacob  6 , Gwenn Menvielle  5 , Sibille Everhard  7 , Francis Guillemin  2   3   4 , Ines Vaz Luis  5   8 , Maria Alice Franzoi  5
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An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort

Camila Chiodi et al. Qual Life Res. 2024 May.

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.

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