Feedback of trial results to participants: a survey of clinicians’ and patients’ attitudes and experiences

Cox, Karen and Moghaddam, Nima and Bird, Lydia and Elkan, Ruth (2011) Feedback of trial results to participants: a survey of clinicians’ and patients’ attitudes and experiences. European Journal of Oncology Nursing, 15 (2). pp. 124-129. ISSN 1462-3889

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Official URL: http://dx.doi.org/10.1016/j.ejon.2010.06.009

Abstract

Purpose

There is growing interest in the provision of trial results to trial participants. However, there are a number of gaps in the research base relating to the closure of clinical trials and feedback of results to participants.
Methods

The aim of this research was to explore the practice of feeding back trial results to trial participants and to identify best practice in this area. Postal questionnaires were sent to members of the UK National Cancer Research Institute Clinical Studies Groups (NCRI CSG) and to patients over the age of 18 years who completed trial treatment (located in one Cancer Network) during a 16-month period (April 07–July 08).
Results

145 NCRI CSG member surveys and 81 patient questionnaires were returned. The vast majority of all respondents supported the idea of offering results to trial participants. However, NCRI members and trial participants differed in their opinions about the timing and method for the provision of results.
Conclusion

The results provide an insight into the views of these groups in relation to desire for results and practical aspects of results feedback which should inform further investigations into trial management and the practice of feedback of trial results.

Item Type:Article
Additional Information:Purpose There is growing interest in the provision of trial results to trial participants. However, there are a number of gaps in the research base relating to the closure of clinical trials and feedback of results to participants. Methods The aim of this research was to explore the practice of feeding back trial results to trial participants and to identify best practice in this area. Postal questionnaires were sent to members of the UK National Cancer Research Institute Clinical Studies Groups (NCRI CSG) and to patients over the age of 18 years who completed trial treatment (located in one Cancer Network) during a 16-month period (April 07–July 08). Results 145 NCRI CSG member surveys and 81 patient questionnaires were returned. The vast majority of all respondents supported the idea of offering results to trial participants. However, NCRI members and trial participants differed in their opinions about the timing and method for the provision of results. Conclusion The results provide an insight into the views of these groups in relation to desire for results and practical aspects of results feedback which should inform further investigations into trial management and the practice of feedback of trial results.
Keywords:Cancer, Clinical Trials, Results feedback
Subjects:A Medicine and Dentistry > A300 Clinical Medicine
C Biological Sciences > C841 Health Psychology
Divisions:College of Social Science > School of Psychology
ID Code:5485
Deposited By: Nima Moghaddam
Deposited On:08 May 2012 18:17
Last Modified:26 Feb 2013 20:50

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