title: Patient experiences in retinal trials: a cross-sectional study.
abstract: BACKGROUND
  Patient-centered care recognizes the obligation to understand and meet patient's expectations. An individual's satisfaction has been found to affect health-related decisions and treatment-related behaviours, which in turn affect medical compliance, follow-up, the success of treatment and the appropriate use of services. We studied the expectations, experiences and satisfaction of patients who participated in clinical trials for retinal diseases at the Sydney Eye Hospital.
  
  
  METHODS
  The study was undertaken at the research clinic of the major public quaternary eye hospital in New South Wales, Australia. A 37-question survey was conducted on patients enrolled in or who had finished a clinical trial for macular disease in the 12 months preceding this study in November 2012. Patient satisfaction was assessed using close-ended, multiple choice questions. First, the decision making process for entering into the clinical trial was evaluated. Then the level of patient understanding and experience during the study was assessed. Finally, there was a series of questions to gauge the participants' perception of trial outcomes and overall impression gained from the experience.
  
  
  RESULTS
  Eighty patients completed the questionnaire. Overall patient satisfaction was high with the majority of patients stating they would recommend participation in a retinal clinical trial (94 %) and participate in a subsequent trial (78 %). Most patients rated themselves as the most important factor in making the decision to join a trial. Patients felt well informed and expectations were generally felt to be met, however 14 % did not believe that they could withdraw from the study voluntarily. The most common reasons for trial participation were to contribute to medical science and to have improved treatment outcomes.
  
  
  CONCLUSIONS
  We found that patients generally found participation in retinal clinical trials to be a positive experience. Factors contributing to dissatisfaction mainly related to inconvenience experienced by transportation and waiting times. We also found that patients felt well informed about the study, but some did not have a complete understanding of their rights, which had been communicated to them when they entered the study. There were both altruistic and self-motivated reasons behind patients' decisions to join a retinal trial.
authors.affiliation: Department of Ophthalmology, Westmead Hospital, Sydney, Australia. cheryl.au@gmail.com.|Sydney Medical School, University of Sydney, Sydney, Australia. cheryl.au@gmail.com.
authors.forename: Cheryl Pui-Yan
authors.initials: CP
authors.lastname: Au
authors.affiliation: Sydney Medical School, University of Sydney, Sydney, Australia. nfar3343@uni.sydney.edu.au.
authors.forename: Nicole
authors.initials: N
authors.lastname: Fardell
authors.affiliation: Macular Research Group, Room 116, Level 1, Save Sight Institute, Campus of Sydney Eye Hospital, 8 Macquarie St, Sydney, NSW, 2000, Australia. maria.williams@sydney.edu.au.
authors.forename: Maria
authors.initials: M
authors.lastname: Williams
authors.affiliation: Macular Research Group, Room 116, Level 1, Save Sight Institute, Campus of Sydney Eye Hospital, 8 Macquarie St, Sydney, NSW, 2000, Australia. sfraserbell@gmail.com.
authors.forename: Samantha
authors.initials: S
authors.lastname: Fraser-Bell
authors.affiliation: Macular Research Group, Room 116, Level 1, Save Sight Institute, Campus of Sydney Eye Hospital, 8 Macquarie St, Sydney, NSW, 2000, Australia. anna.campain@sydney.edu.au.
authors.forename: Anna
authors.initials: A
authors.lastname: Campain
authors.affiliation: Sydney Medical School, University of Sydney, Sydney, Australia. mark.gillies@sydney.edu.au.|Macular Research Group, Room 116, Level 1, Save Sight Institute, Campus of Sydney Eye Hospital, 8 Macquarie St, Sydney, NSW, 2000, Australia. mark.gillies@sydney.edu.au.
authors.forename: Mark
authors.initials: M
authors.lastname: Gillies
mesh_terms: D000368:Aged; D001315:Australia; D002986:Clinical Trials as Topic / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009042:Motivation; D010358:Patient Participation / Q000523:psychology*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D018802:Patient-Centered Care; D010817:Physician-Patient Relations; D012164:Retinal Diseases / Q000188:drug therapy*; D011795:Surveys and Questionnaires