Literature DB >> 20462521

Consent in clinical trials: what do patients know?

Pilar Hereu1, Eulàlia Pérez, Inma Fuentes, Xavier Vidal, Pilar Suñé, Josep Maria Arnau.   

Abstract

OBJECTIVE: To assess participants' knowledge of key aspects about the clinical trials in which they are enrolled, describe the consent process, and assess the importance that investigators give to various aspects of trial information when verbally informing candidates.
DESIGN: Prospective study based on a structured questionnaire interview of participants within 3 months after trial enrollment and an anonymous questionnaire sent to clinical trial investigators.
SUBJECTS: A total of 140 participants included in 40 clinical trials were interviewed, and 51 investigators answered the questionnaire.
RESULTS: The formal steps to obtain informed consent were usually carried out. Participants were aware of the purpose of the trial and the right to discontinue participation, but only 23% knew that treatment was randomly allocated, 57% knew they might receive a placebo, and 42% was aware that adverse effects could occur. Patients who had read the information sheet had better knowledge of most aspects, except for the risk of adverse effects. The investigators considered that compensation, insurance coverage, possibility of receiving a placebo, and treatment allocation were the least important aspects of the trial when informing candidates for participation.
CONCLUSIONS: Although the formal steps for obtaining informed consent were usually carried out, a relevant percentage of patients included in clinical trials were unaware of important aspects of their participation. Patients showed more limited knowledge about the same points that investigators considered less important when informing potential participants. Deferring signature on the consent form and encouraging reading of the information sheet may improve participants' knowledge about clinical trials. Copyright 2010 Elsevier Inc. All rights reserved.

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Year:  2010        PMID: 20462521     DOI: 10.1016/j.cct.2010.05.004

Source DB:  PubMed          Journal:  Contemp Clin Trials        ISSN: 1551-7144            Impact factor:   2.226


  10 in total

1.  Patient Information and Informed Consent for Research in the Elderly: Lessons Learned from a Randomized Controlled Trial.

Authors:  Maria López-Parra; Francesc Zamora-Carmona; Mònica Sianes-Gallén; Esmeralda López-González; Dolors Gil-Rey; Helena Costa-Ventura; Miriam Borrás-Sánchez; Gemma Rayo-Posadas; Marta Arizu-Puigvert; Roser Vives-Vilagut
Journal:  Healthcare (Basel)       Date:  2022-06-02

2.  Therapeutic misconception in research subjects: development and validation of a measure.

Authors:  Paul S Appelbaum; Milena Anatchkova; Karen Albert; Laura B Dunn; Charles W Lidz
Journal:  Clin Trials       Date:  2012-08-31       Impact factor: 2.486

Review 3.  Participants' understanding of informed consent in clinical trials over three decades: systematic review and meta-analysis.

Authors:  Nguyen Thanh Tam; Nguyen Tien Huy; Le Thi Bich Thoa; Nguyen Phuoc Long; Nguyen Thi Huyen Trang; Kenji Hirayama; Juntra Karbwang
Journal:  Bull World Health Organ       Date:  2015-01-22       Impact factor: 9.408

4.  Placebo-controlled clinical trials: how trial documents justify the use of randomisation and placebo.

Authors:  Tapani Keränen; Arja Halkoaho; Emmi Itkonen; Anna-Maija Pietilä
Journal:  BMC Med Ethics       Date:  2015-01-11       Impact factor: 2.652

5.  The definition of placebo in the informed consent forms of clinical trials.

Authors:  Astrid Hernández; Josep-E Baños; Cristina Llop; Magí Farré
Journal:  PLoS One       Date:  2014-11-25       Impact factor: 3.240

Review 6.  Patient involvement in clinical research: why, when, and how.

Authors:  José A Sacristán; Alfonso Aguarón; Cristina Avendaño-Solá; Pilar Garrido; Juan Carrión; Alipio Gutiérrez; Robert Kroes; Angeles Flores
Journal:  Patient Prefer Adherence       Date:  2016-04-27       Impact factor: 2.711

7.  Understanding of research, genetics and genetic research in a rapid ethical assessment in north west Cameroon.

Authors:  Jonas A Kengne-Ouafo; James D Millard; Theobald M Nji; William F Tantoh; Doris N Nyoh; Nicholas Tendongfor; Peter A Enyong; Melanie J Newport; Gail Davey; Samuel Wanji
Journal:  Int Health       Date:  2015-05-12       Impact factor: 2.473

8.  Patient perceptions of the challenges of recruitment to a renal randomised trial registry: a pilot questionnaire-based study.

Authors:  Ellen Murphy; Aoife O'Keeffe; Niamh O Shea; Eva Long; Joseph A Eustace; Frances Shiely
Journal:  Trials       Date:  2021-09-06       Impact factor: 2.279

9.  Patients' knowledge about their involvement in clinical trials. A non-randomized controlled trial.

Authors:  Pablo Juan-Salvadores; Marcela Sánchez Michel Gómez; Víctor Alfonso Jiménez Díaz; Cristina Martínez Reglero; Andrés Iñiguez Romo
Journal:  Front Med (Lausanne)       Date:  2022-09-20

10.  Health literacy predicts participant understanding of orally-presented informed consent information.

Authors:  Raymond L Ownby; Amarilis Acevedo; Kenneth Goodman; Joshua Caballero; Drenna Waldrop-Valverde
Journal:  Clin Res Trials       Date:  2015-04-19
  10 in total

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