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dc.contributor.authorvon Itzstein, Mitchell S
dc.contributor.authorRailey, Elda
dc.contributor.authorSmith, Mary L
dc.contributor.authorWhite, Carol B
dc.contributor.authorSledge, George W
dc.contributor.authorHowell, John R
dc.contributor.authorLawton, Wendy
dc.contributor.authorMarinucci, Donna M
dc.contributor.authorUnni, Nisha
dc.contributor.authorGerber, David E
dc.date.accessioned2021-01-18T22:19:20Z
dc.date.available2021-01-18T22:19:20Z
dc.date.issued2020
dc.identifier.issn0008-543X
dc.identifier.doi10.1002/cncr.32730
dc.identifier.urihttp://hdl.handle.net/10072/401239
dc.description.abstractBackground: Although there is increased attention to designing and explaining clinical trials in ways that are clinically meaningful for patients, there is limited information on patient preferences, understanding, and perceptions of this content. Methods: Maximum difference scaling (MaxDiff) methodology was used to develop a survey for assessing patients' understanding of 19 clinical terms and perceived importance of 9 endpoint surrogate phrases used in clinical trials and consent forms. The survey was administered electronically to individuals with metastatic breast cancer affiliated with the Metastatic Breast Cancer Alliance. Analyses were performed using Bayesian P values with statistical software. Results: Among 503 respondents, 77% had a college degree, 70% were diagnosed with metastatic disease ≥2 years before survey completion, and 77% had received ≥2 lines of systemic therapy. Less than 35% of respondents reported understanding “fairly well” the terms symptomatic progression, duration of disease control, time to treatment cessation, and endpoints. Income level and time since onset of metastatic disease correlated with comprehension. Patients who had received ≥6 lines of therapy perceived that time until serious side effects (P <.001) and time on therapy (P <.001) were more important compared with those who had received only 1 line of therapy. Positively phrased parameters were associated with increased perceived importance. Conclusions: Even among educated, heavily pretreated patients, many commonly used clinical research terms are poorly understood. Comprehension and the perceived importance of trial endpoints vary over the course of disease. These observations may inform the design, discussion, and reporting of clinical trials.
dc.description.peerreviewedYes
dc.languageEnglish
dc.publisherWiley
dc.relation.ispartofpagefrom1605
dc.relation.ispartofpageto1613
dc.relation.ispartofissue8
dc.relation.ispartofjournalCancer
dc.relation.ispartofvolume126
dc.subject.fieldofresearchOncology and carcinogenesis
dc.subject.fieldofresearchHealth services and systems
dc.subject.fieldofresearchPublic health
dc.subject.fieldofresearchcode3211
dc.subject.fieldofresearchcode4203
dc.subject.fieldofresearchcode4206
dc.subject.keywordsScience & Technology
dc.subject.keywordsLife Sciences & Biomedicine
dc.subject.keywordsbreast cancer
dc.subject.keywordsclinical trial
dc.titlePatient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology
dc.typeJournal article
dc.type.descriptionC1 - Articles
dcterms.bibliographicCitationvon Itzstein, MS; Railey, E; Smith, ML; White, CB; Sledge, GW; Howell, JR; Lawton, W; Marinucci, DM; Unni, N; Gerber, DE, Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology, Cancer, 2020, 126 (8), pp. 1605-1613
dcterms.dateAccepted2019-12-16
dc.date.updated2021-01-18T22:14:44Z
dc.description.versionAccepted Manuscript (AM)
gro.description.notepublic© 2020 American Cancer Society. This is the peer reviewed version of the following article: Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology, Cancer, 2020, 126 (8), pp. 1605-1613, which has been published in final form at https://doi.org/10.1002/cncr.32730. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving (http://olabout.wiley.com/WileyCDA/Section/id-828039.html)
gro.hasfulltextFull Text
gro.griffith.authorVon Itzstein, Mitchell S.


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