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Clinical trials perception in rheumatology patients: experience from a single rheumatology tertiary center

Ciurtin, C; Leandro, M; Fitz-Clarence, H; Nguyen, H; Walsh, SB; Isenberg, DA; (2015) Clinical trials perception in rheumatology patients: experience from a single rheumatology tertiary center. The Journal of Rheumatology , 42 (6) pp. 988-993. 10.3899/jrheum.141091. Green open access

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Abstract

Objective. To investigate the perception and willingness of rheumatology patients to participate in clinical trials. No previous similar studies are available. / Methods. We conducted a cross-sectional survey of rheumatology patients using a questionnaire, which comprised 2 demographic questions, two 5-point Likert opinion questions, 19 true/false/unsure knowledge questions, and 1 open question addressing what would help the participant to gain a better understanding about clinical trials. / Results. Eighty-five patients returned the questionnaires (response rate 84.1%). The mean number of correct answers to the 19 knowledge questions was 10.5 ± 2.87. Patients with higher versus lower levels of education had significantly higher knowledge scores (mean correct answers 59.4 ± 13.1 vs 39.8 ± 20.4, p = 0.013). They also expressed greater willingness to take part in research (87.5% vs 48.2%, p < 0.001). The patients who agreed to participate in research provided significantly more correct answers (59.4 ± 15.3% vs 47.7 ± 27.2%, p = 0.032). Poor disease control as the main reason to join a clinical trial correlated well with patients’ previous participation in research (r = 0.71; p < 0.05) and the lack of understanding of research principles (defined as less than 50% correct answers to the knowledge questions) correlated with the lack of willingness to participate in clinical trials (r = 0.72; p < 0.05). / Conclusion. The results of our study revealed that patients lack information about clinical trials (the correct response rate was only slightly above 50%), and that they had a moderate willingness to take part in clinical trials. The need for educational programs about clinical research was highlighted by the participants to the survey.

Type: Article
Title: Clinical trials perception in rheumatology patients: experience from a single rheumatology tertiary center
Location: Canada
Open access status: An open access version is available from UCL Discovery
DOI: 10.3899/jrheum.141091
Publisher version: http://dx.doi.org/10.3899/jrheum.141091
Language: English
Additional information: This is a pre-copy-editing, author-produced PDF of an article accepted for publication in The Journal of Rheumatology following peer review. The definitive publisher-authenticated version, Ciurtin, C; Leandro, M; Fitz-Clarence, H; Nguyen, H; Walsh, SB; Isenberg, DA; (2015) Clinical trials perception in rheumatology patients: experience from a single rheumatology tertiary center. The Journal of Rheumatology, 42 (6) pp. 988-993, is available online at: http://dx.doi.org/10.3899/jrheum.141091.
Keywords: clinical trials, patient education, questionnaire
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Inflammation
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Renal Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology > Comprehensive CTU at UCL
URI: https://discovery.ucl.ac.uk/id/eprint/1465519
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