Journal article
Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology
Cancer, v 126(8), pp 1605-1613
15 Apr 2020
PMID: 31967687
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Background
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.
Metrics
Details
- Title
- Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology
- Creators
- Mitchell S. von Itzstein - The University of Texas Southwestern Medical CenterElda Railey - Research Advocacy NetworkMary L. Smith - Research Advocacy NetworkCarol B. White - Research Advocacy NetworkGeorge W. Sledge - Research Advocacy NetworkJohn R. Howell - Brigham Young UniversityWendy Lawton - Research Advocacy NetworkDonna M. Marinucci - Drexel University, SOM Dean - Research AdministrationNisha Unni - The University of Texas Southwestern Medical CenterDavid E. Gerber - The University of Texas Southwestern Medical Center
- Publication Details
- Cancer, v 126(8), pp 1605-1613
- Publisher
- Wiley
- Number of pages
- 9
- Grant note
- Metastatic Breast Cancer Network K24 CA201543-01 / National Cancer Institute Midcareer Investigator Award in Patient-Oriented Research NCG31570 / Novartis G-51105 / Genentech; Roche Holding
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- College of Medicine
- Web of Science ID
- WOS:000508511500001
- Scopus ID
- 2-s2.0-85078681558
- Other Identifier
- 991021860684604721
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InCites Highlights
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Oncology