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

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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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