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Gepubliceerd in:

05-03-2024

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

Auteurs: Camila Chiodi, Jonathan Epstein, Johanna Arvis, Elise Martin, Aude Barbier, Antonio Di Meglio, Emma Gillanders, Guillemette Jacob, Gwenn Menvielle, Sibille Everhard, Francis Guillemin, Ines Vaz Luis, Maria Alice Franzoi

Gepubliceerd in: Quality of Life Research | Uitgave 5/2024

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.

vorige artikel Patient acceptable symptom state and treatment failure threshold values for work productivity and activity Impairment and EQ-5D-5L in osteoarthritis

volgende artikel Evaluation of the internet-based intervention “Selfapy” in participants with unipolar depression and the impact on quality of life: a randomized, parallel group study

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Titel: An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort
Auteurs: Camila Chiodi
Jonathan Epstein
Johanna Arvis
Elise Martin
Aude Barbier
Antonio Di Meglio
Emma Gillanders
Guillemette Jacob
Gwenn Menvielle
Sibille Everhard
Francis Guillemin
Ines Vaz Luis
Maria Alice Franzoi
Publicatiedatum: 05-03-2024
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 5/2024
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-024-03600-8

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Abstract

Purpose

Methods

Results

Conclusion

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