Patients' motives for consenting or refusing to participate in a clinical trial in organ transplantation

Abstract : Background: The goal of this health‐psychology study was to investigate the range of motives that make someone consent or refuse participation in a clinical transplant trial. Methods: The study involved (i) preparatory interviews with five transplant patients who took part in clinical trials and five persons from the general public; (ii) we created a questionnaire with scaled responses; (iii) we selected 468 patients, divided into two groups: patients waiting for a transplant and patients who already had a transplant; (iv) we obtained patient consents, sent out the questionnaire, and recorded responses; (v) data were analysed using descriptive statistics, exploratory factorial analyses, correlations and regressions. Results: Two hundred and ten patients answered the questionnaire. Motives were classified into the following: (i) Motives to consent participating in a clinical trial (pride in participating, hope for better quality of life, sufficient and clear information, discussion with others participating in a trial, altruism); or (ii) Motives to refuse participating (no information on medical teams, lack of explanation, fear of additional expenses, being considered a “guinea pig”). Conclusions: This study contributes to our understanding of the motivations of patients who accepted or refused participation in a clinical transplantation trial.
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Submitted on : Wednesday, December 12, 2018 - 3:29:42 PM
Last modification on : Thursday, October 31, 2019 - 9:20:03 AM

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Myriam Guedj, Sandrine Ballester, Nassim Kamar, Lionel Rostaing, Vincent Donckier, et al.. Patients' motives for consenting or refusing to participate in a clinical trial in organ transplantation. Clinical Transplantation, Wiley, 2013, 27 (5), pp.724-731. ⟨10.1111/ctr.12214⟩. ⟨hal-01953018⟩

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