title: Clinical trials perception in rheumatology patients: experience from a single rheumatology tertiary center.
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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: From the Department of Rheumatology, University College London Hospitals National Health Service (NHS) Foundation Trust; Centre for Nephrology, University College London, London, UK.C. Ciurtin, PhD, Consultant Rheumatologist; M. Leandro, PhD, Consultant Rheumatologist; H. Fitz-Clarence, PhD, Consultant Rheumatologist; H. Nguyen, MSc, Rheumatology Researcher; D.A. Isenberg, MD, Academic Director, Centre for Rheumatology Research, Department of Rheumatology, University College London Hospitals NHS Foundation Trust; S.B. Walsh, PhD, Senior Lecturer in Experimental Medicine and Honorary Consultant Nephrologist, Centre for Nephrology, University College London. c.ciurtin@ucl.ac.uk.
authors.forename: Coziana
authors.initials: C
authors.lastname: Ciurtin
authors.affiliation: From the Department of Rheumatology, University College London Hospitals National Health Service (NHS) Foundation Trust; Centre for Nephrology, University College London, London, UK.C. Ciurtin, PhD, Consultant Rheumatologist; M. Leandro, PhD, Consultant Rheumatologist; H. Fitz-Clarence, PhD, Consultant Rheumatologist; H. Nguyen, MSc, Rheumatology Researcher; D.A. Isenberg, MD, Academic Director, Centre for Rheumatology Research, Department of Rheumatology, University College London Hospitals NHS Foundation Trust; S.B. Walsh, PhD, Senior Lecturer in Experimental Medicine and Honorary Consultant Nephrologist, Centre for Nephrology, University College London.
authors.forename: Maria
authors.initials: M
authors.lastname: Leandro
authors.affiliation: From the Department of Rheumatology, University College London Hospitals National Health Service (NHS) Foundation Trust; Centre for Nephrology, University College London, London, UK.C. Ciurtin, PhD, Consultant Rheumatologist; M. Leandro, PhD, Consultant Rheumatologist; H. Fitz-Clarence, PhD, Consultant Rheumatologist; H. Nguyen, MSc, Rheumatology Researcher; D.A. Isenberg, MD, Academic Director, Centre for Rheumatology Research, Department of Rheumatology, University College London Hospitals NHS Foundation Trust; S.B. Walsh, PhD, Senior Lecturer in Experimental Medicine and Honorary Consultant Nephrologist, Centre for Nephrology, University College London.
authors.forename: Halina
authors.initials: H
authors.lastname: Fitz-Clarence
authors.affiliation: From the Department of Rheumatology, University College London Hospitals National Health Service (NHS) Foundation Trust; Centre for Nephrology, University College London, London, UK.C. Ciurtin, PhD, Consultant Rheumatologist; M. Leandro, PhD, Consultant Rheumatologist; H. Fitz-Clarence, PhD, Consultant Rheumatologist; H. Nguyen, MSc, Rheumatology Researcher; D.A. Isenberg, MD, Academic Director, Centre for Rheumatology Research, Department of Rheumatology, University College London Hospitals NHS Foundation Trust; S.B. Walsh, PhD, Senior Lecturer in Experimental Medicine and Honorary Consultant Nephrologist, Centre for Nephrology, University College London.
authors.forename: Hanh
authors.initials: H
authors.lastname: Nguyen
authors.affiliation: From the Department of Rheumatology, University College London Hospitals National Health Service (NHS) Foundation Trust; Centre for Nephrology, University College London, London, UK.C. Ciurtin, PhD, Consultant Rheumatologist; M. Leandro, PhD, Consultant Rheumatologist; H. Fitz-Clarence, PhD, Consultant Rheumatologist; H. Nguyen, MSc, Rheumatology Researcher; D.A. Isenberg, MD, Academic Director, Centre for Rheumatology Research, Department of Rheumatology, University College London Hospitals NHS Foundation Trust; S.B. Walsh, PhD, Senior Lecturer in Experimental Medicine and Honorary Consultant Nephrologist, Centre for Nephrology, University College London.
authors.forename: Stephen B
authors.initials: SB
authors.lastname: Walsh
authors.affiliation: From the Department of Rheumatology, University College London Hospitals National Health Service (NHS) Foundation Trust; Centre for Nephrology, University College London, London, UK.C. Ciurtin, PhD, Consultant Rheumatologist; M. Leandro, PhD, Consultant Rheumatologist; H. Fitz-Clarence, PhD, Consultant Rheumatologist; H. Nguyen, MSc, Rheumatology Researcher; D.A. Isenberg, MD, Academic Director, Centre for Rheumatology Research, Department of Rheumatology, University College London Hospitals NHS Foundation Trust; S.B. Walsh, PhD, Senior Lecturer in Experimental Medicine and Honorary Consultant Nephrologist, Centre for Nephrology, University College London.
authors.forename: David A
authors.initials: DA
authors.lastname: Isenberg
mesh_terms: D000328:Adult; D000368:Aged; D000704:Analysis of Variance; D002986:Clinical Trials as Topic; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006785:Hospitals, University; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D010465:Perception; D012216:Rheumatic Diseases / Q000175:diagnosis / Q000628:therapy*; D012219:Rheumatology; D011795:Surveys and Questionnaires; D062606:Tertiary Care Centers; D006113:United Kingdom
keywords: CLINICAL TRIALS; PATIENT EDUCATION; QUESTIONNAIRE