Vol 10, No 1 (2024)
Research paper
Published online: 2023-06-21

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Rheumatic disease patients’ motivations and emotions related to the decision to participate in a clinical trial: preliminary findings

Marta Jeka1, Daniel Jeka2, Eugeniusz Daniszewski3, Ewa Mojs4
Rheumatology Forum 2024;10(1):4-8.

Abstract

Introduction: Clinical trials are extremely important in the development of modern therapies. Unfortunately, it is currently difficult to recruit patients for clinical trials, which involves increased costs and time. For this reason, increasing attention is being paid to patients' emotions and motivations related to clinical trial participation. Their thorough understanding can be crucial not only to persuade patients to participate in clinical trials but also keep them in the trial.

Aim: This study aims to identify which expectations regarding clinical trials have the greatest influence on the decision to participate in them among a group of patients with rheumatic diseases.

Material and methods: Sixty-nine (50K/19M) patients with rheumatic diseases were included in the study. The mean age of the patients was 50.8 ± 12.9 years and the mean disease duration was 13.1 ± 9.3 years. Patients included in the study were asked to complete a questionnaire with questions about their reasons for participating in clinical trials, their emotions about it and their attitudes towards clinical trials.

Results: In the study group, the predominant reason for participating in a clinical trial was to receive positive information about the trial from a rheumatologist, with 45 (70%) respondents giving this answer. The second most common reason for enrolling in a clinical trial was the lack of improvement during standard treatment, with 32 (46%) respondents. The most frequently reported emotion associated with entering a clinical trial was hope — 53 (77%) of respondents.

Conclusions: People with rheumatic diseases who decide to participate in a clinical trial most often make this decision based on a conversation with their attending physician, with motivations and hopes associated with improved efficacy of a new therapy.

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