RT Journal Article
SR Electronic
T1 Clinical Trials Perception in Rheumatology Patients: Experience from a Single Rheumatology Tertiary Center
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP jrheum.141091
DO 10.3899/jrheum.141091
A1 Coziana Ciurtin
A1 Maria Leandro
A1 Halina Fitz-Clarence
A1 Hanh Nguyen
A1 Stephen B.  Walsh
A1 David A.  Isenberg
YR 2015
UL http://www.jrheum.org/content/early/2015/03/25/jrheum.141091.abstract
AB 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.