We found a match
Your institution may have access to this item. Find your institution then sign in to continue.
- Title
An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort.
- Authors
Chiodi, Camila; Epstein, Jonathan; Arvis, Johanna; Martin, Elise; Barbier, Aude; Di Meglio, Antonio; Gillanders, Emma; Jacob, Guillemette; Menvielle, Gwenn; Everhard, Sibille; Guillemin, Francis; Luis, Ines Vaz; Franzoi, Maria Alice
- 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.
- Subjects
PATIENT reported outcome measures; NEUROLINGUISTICS; READABILITY (Literary style); ACQUISITION of data; PATIENT-centered care; PATIENT education; MACHINE translating
- Publication
Quality of Life Research, 2024, Vol 33, Issue 5, p1267
- ISSN
0962-9343
- Publication type
Article
- DOI
10.1007/s11136-024-03600-8