An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort.
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| Title: | An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort. |
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| Authors: | Chiodi, Camila (AUTHOR), Epstein, Jonathan (AUTHOR), Arvis, Johanna (AUTHOR), Martin, Elise (AUTHOR), Barbier, Aude (AUTHOR), Di Meglio, Antonio (AUTHOR), Gillanders, Emma (AUTHOR), Jacob, Guillemette (AUTHOR), Menvielle, Gwenn (AUTHOR), Everhard, Sibille (AUTHOR), Guillemin, Francis (AUTHOR), Luis, Ines Vaz (AUTHOR), Franzoi, Maria Alice (AUTHOR) |
| Source: | Quality of Life Research. May2024, Vol. 33 Issue 5, p1267-1274. 8p. |
| Subjects: | Patient reported outcome measures, Neurolinguistics, Readability (Literary style), Acquisition of data, Patient-centered care, Patient education, Machine translating |
| 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. [ABSTRACT FROM AUTHOR] |
| Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
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| Header | DbId: pbh DbLabel: Psychology and Behavioral Sciences Collection An: 177776362 AccessLevel: 6 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Chiodi%2C+Camila%22">Chiodi, Camila</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Epstein%2C+Jonathan%22">Epstein, Jonathan</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Arvis%2C+Johanna%22">Arvis, Johanna</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Martin%2C+Elise%22">Martin, Elise</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Barbier%2C+Aude%22">Barbier, Aude</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Di+Meglio%2C+Antonio%22">Di Meglio, Antonio</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gillanders%2C+Emma%22">Gillanders, Emma</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jacob%2C+Guillemette%22">Jacob, Guillemette</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Menvielle%2C+Gwenn%22">Menvielle, Gwenn</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Everhard%2C+Sibille%22">Everhard, Sibille</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Guillemin%2C+Francis%22">Guillemin, Francis</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Luis%2C+Ines+Vaz%22">Luis, Ines Vaz</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Franzoi%2C+Maria+Alice%22">Franzoi, Maria Alice</searchLink> (AUTHOR) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22Quality+of+Life+Research%22">Quality of Life Research</searchLink>. May2024, Vol. 33 Issue 5, p1267-1274. 8p. – Name: Subject Label: Subjects Group: Su Data: <searchLink fieldCode="DE" term="%22Patient+reported+outcome+measures%22">Patient reported outcome measures</searchLink><br /><searchLink fieldCode="DE" term="%22Neurolinguistics%22">Neurolinguistics</searchLink><br /><searchLink fieldCode="DE" term="%22Readability+%28Literary+style%29%22">Readability (Literary style)</searchLink><br /><searchLink fieldCode="DE" term="%22Acquisition+of+data%22">Acquisition of data</searchLink><br /><searchLink fieldCode="DE" term="%22Patient-centered+care%22">Patient-centered care</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+education%22">Patient education</searchLink><br /><searchLink fieldCode="DE" term="%22Machine+translating%22">Machine translating</searchLink> – Name: Abstract Label: Abstract Group: Ab Data: 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. [ABSTRACT FROM AUTHOR] – Name: AbstractSuppliedCopyright Label: Group: Ab Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.) |
| PLink | https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=177776362 |
| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1007/s11136-024-03600-8 Languages: – Code: eng Text: English PhysicalDescription: Pagination: PageCount: 8 StartPage: 1267 Subjects: – SubjectFull: Patient reported outcome measures Type: general – SubjectFull: Neurolinguistics Type: general – SubjectFull: Readability (Literary style) Type: general – SubjectFull: Acquisition of data Type: general – SubjectFull: Patient-centered care Type: general – SubjectFull: Patient education Type: general – SubjectFull: Machine translating Type: general Titles: – TitleFull: An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Chiodi, Camila – PersonEntity: Name: NameFull: Epstein, Jonathan – PersonEntity: Name: NameFull: Arvis, Johanna – PersonEntity: Name: NameFull: Martin, Elise – PersonEntity: Name: NameFull: Barbier, Aude – PersonEntity: Name: NameFull: Di Meglio, Antonio – PersonEntity: Name: NameFull: Gillanders, Emma – PersonEntity: Name: NameFull: Jacob, Guillemette – PersonEntity: Name: NameFull: Menvielle, Gwenn – PersonEntity: Name: NameFull: Everhard, Sibille – PersonEntity: Name: NameFull: Guillemin, Francis – PersonEntity: Name: NameFull: Luis, Ines Vaz – PersonEntity: Name: NameFull: Franzoi, Maria Alice IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 05 Text: May2024 Type: published Y: 2024 Identifiers: – Type: issn-print Value: 09629343 Numbering: – Type: volume Value: 33 – Type: issue Value: 5 Titles: – TitleFull: Quality of Life Research Type: main |
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