Participants' preference for type of leaflet used to feed back the results of a randomised trial: a survey
1 Department of Health Sciences, Seebohm Rowntree Building, University of York, Heslington, York YO10 5DD, UK
2 Department of Health Economics, Occupational Health Building, University of Birmingham, Birmingham, West Midlands, B15 2TT, UK
3 School of Health & Social Care, University of Teesside, Parkside West Offices, Middlesbrough, TS1 3BA, UK
4 Department of Primary Care & Public Health, School of Medicine, Cardiff University, Neuadd Meirionydd, Heath Park, Cardiff, CF14 4YS, UK
5 Department of Medicine, University of British Columbia, Centre for Clinical Epidemiology & Evaluation, 702 - 828 West 10th Avenue, Research Pavilion, Vancouver, BC V5Z 1M9, Canada
6 Centre for Health Service Studies, Cornwallis George Allen Wing, University of Kent, Canterbury, Kent CT2 7NF, UK
7 Department of Psychology, Leeds Metropolitan University, Leeds LS1 3HE, UK
8 Norwegian Knowledge Centre for Health Services, PO Box 7004, St Olavs plass, N-0130 Oslo, Norway
9 Department of Radiology, Lillian Sutton Building, University of Aberdeen, Foresterhill, Aberdeen, AB25 2ZD, UK
10 Cardiff University School of Medicine, North Wales Clinical School, Gwenfro Building, Unit 5, Wrexham Technology Park, Wrexham, LL13 7YP, UK
11 South East Wales Trials Unit, School of Medicine, Cardiff University, Neuadd Meirionydd, Heath Park, Cardiff, CF14 4YS, UK
12 X-ray Department, York Hospital, Wigginton Road, York, YO31 8HE, UK
13 School of Medicine, Swansea University, Swansea, SA2 8PP, UK
Trials 2010, 11:116 doi:10.1186/1745-6215-11-116Published: 1 December 2010
Hundreds of thousands of volunteers take part in medical research, but many will never hear from researchers about what the study revealed. There is a growing demand for the results of randomised trials to be fed back to research participants both for ethical research practice and for ensuring their co-operation in a trial. This study aims to determine participants' preferences for type of leaflet (short versus long) used to summarise the findings of a randomised trial; and to test whether certain characteristics explained participants' preferences.
553 participants in a randomised trial about General Practitioners' access to Magnetic Resonance Imaging for patients presenting with suspected internal derangement of the knee were asked in the final follow-up questionnaire whether they would like to be fed back the results of the trial. Participants who agreed to this were included in a postal questionnaire survey asking about their preference, if any, between a short and a long leaflet and what it was about the leaflet that they preferred. Multinomial logistic regression was used to test whether certain demographics of responding participants along with treatment group explained whether a participant had a preference for type of leaflet or no preference.
Of the participants who returned the final follow-up questionnaire, 416 (88%) agreed to receive the results of the trial. Subsequently 132 (32%) participants responded to the survey. Most participants preferred the longer leaflet (55%) and the main reasons for this were the use of technical information (94%) and diagrams (89%). There was weak evidence to suggest that gender might explain whether participants have a preference for type of leaflet or not (P = 0.084).
Trial participants want to receive feed back about the results and appear to prefer a longer leaflet. Males and females might require information to be communicated to them differently and should be the focus of further research.