Literature DB >> 23821757

Consent form heterogeneity in cancer trials: the cooperative group and institutional review board gap.

Shlomo A Koyfman1, Patricia Agre, Regina Carlisle, Lorianne Classen, Chesley Cheatham, Joanne P Finley, Nancy Kuhrik, Marilee Kuhrik, Toni Kay Mangskau, JoAnn O'Neill, Chandana P Reddy, Eric Kodish, Mary S McCabe.   

Abstract

BACKGROUND: Cooperative group (CG) provided consent forms (CGP-CFs) undergo re-review and revision by local institutional review boards (IRB) before institutional approval. We compared the relative readability and length of IRB-approved consent forms (IRB-CFs) used at seven academic institutions with their corresponding CGP-CFs. We also assessed the variability of these metrics across our institutions.
METHODS: This study included 197 consent forms (CFs) from 56 CG trials that were open in at least two of the participating institutions. The Flesch Reading Ease Score (FRES), the Flesch-Kincaid Grade Level (FKGL), and document length were collected on all CFs. Unpaired t test was used to compare length and readability of CGP-CF with the IRB-CF. Analysis of variance and Bonferroni-Dunn tests were used to assess interinstitutional variability in readability for all IRB-CFs. All statistical tests were two-sided.
RESULTS: IRB-CFs were statistically significantly longer than CGP-CFs (mean number of pages = 17 vs 13; P < .001). Mean FKGLs were higher (10.3 vs 9.4; P < .0001) and the mean FRESs were lower (53.1 vs 57.1; P < .0001) for IRB-CFs compared with CGP-CFs. Readability varied statistically significantly between institutions for all sections of the IRB-CF (P < .0001). Finalized IRB-CFs for identical clinical trials at different institutions demonstrated substantial heterogeneity of readability and length.
CONCLUSIONS: As CFs progress from National Cancer Institute (NCI)-sponsored CGs to local IRBs, they seem to become longer and less readable. Interinstitutional heterogeneity in CF readability is substantial and widespread. More consistent adherence to CGP-CFs based on the newly revised NCI CF template with minimal modification by local IRBs should help simplify and standardize CFs used in cancer clinical trials.

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Year:  2013        PMID: 23821757     DOI: 10.1093/jnci/djt143

Source DB:  PubMed          Journal:  J Natl Cancer Inst        ISSN: 0027-8874            Impact factor:   13.506


  7 in total

1.  Reaping the Bounty of Publicly Available Clinical Trial Consent Forms.

Authors:  Holly Fernandez Lynch; Emily A Largent; Deborah A Zarin
Journal:  IRB       Date:  2017 Nov-Dec

2.  A pilot study of simple interventions to improve informed consent in clinical research: feasibility, approach, and results.

Authors:  Nancy E Kass; Holly A Taylor; Joseph Ali; Kristina Hallez; Lelia Chaisson
Journal:  Clin Trials       Date:  2014-12-04       Impact factor: 2.486

3.  Informed consent conversations and documents: A quantitative comparison.

Authors:  Shlomo A Koyfman; Chandana A Reddy; Sabahat Hizlan; Angela C Leek; And Eric D Kodish
Journal:  Cancer       Date:  2015-10-27       Impact factor: 6.860

4.  A need to simplify informed consent documents in cancer clinical trials. A position paper of the ARCAD Group.

Authors:  H Bleiberg; G Decoster; A de Gramont; P Rougier; A Sobrero; A Benson; B Chibaudel; J Y Douillard; C Eng; C Fuchs; M Fujii; R Labianca; A K Larsen; E Mitchell; H J Schmoll; D Sprumont; J Zalcberg
Journal:  Ann Oncol       Date:  2017-05-01       Impact factor: 32.976

5.  Informed consent in oncology clinical trials: A Brown University Oncology Research Group prospective cross-sectional pilot study.

Authors:  Andrew Schumacher; William M Sikov; Matthew I Quesenberry; Howard Safran; Humera Khurshid; Kristen M Mitchell; Adam J Olszewski
Journal:  PLoS One       Date:  2017-02-24       Impact factor: 3.240

Review 6.  Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.

Authors:  Laura M Beskow
Journal:  Annu Rev Genomics Hum Genet       Date:  2016-03-03       Impact factor: 8.929

7.  Developing informed consent materials for non-English-speaking participants: An analysis of four professional firm translations from English to Spanish.

Authors:  Kathleen Marie Brelsford; Ernesto Ruiz; Laura Beskow
Journal:  Clin Trials       Date:  2018-10-08       Impact factor: 2.486

  7 in total

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