Patients’ experiences of participating in phase 3 cancer treatment clinical trials: a qualitative study


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Janice Dodge1
1Great Western Hospital, Swindon, UK

Background

Since the formation of the National Research Cancer Network (NCRN) in 2001, the number of cancer patients participating in clinical trials and studies in the UK has increased significantly. Although there have been qualitative studies of the experiences of early phase trial participants, there has been limited research examining the experiences of participants in phase 3 cancer trials.

The aim of this study was to investigate patients’ experiences of participating in phase 3 cancer clinical trials.

Method

Methodology was developed in partnership with a consumer research group. Semi-structured interviews were performed to explore the experiences of eight patients at one district hospital in England. Topics discussed included: reasons for trial participation, thoughts on the information received about the trial, consideration of physical and psychological needs, feelings at the end of the treatment phase and the advantages and disadvantages of trial participation. Thematic analysis was used to identify common themes.

Results

Altruism (wanting to help others), personal benefits, possible access to shorter treatments, additional drugs and closer monitoring within the trial, were cited as reasons for trial participation. Four participants supplemented the trial information given with their own internet searches. Family support for trial participation and during treatment was important. Participants were complimentary about the support received from research nurses and staff delivering trial treatment. The end of protocol treatment provoked feelings of relief, uncertainty and vulnerability.

Conclusion

Ongoing trial information (during treatment and at treatment completion) should be given to ensure continued understanding. Frequent assessment of trial patients needs is important, with referrals being made to the multidisciplinary team as required. ‘Exit interviews’ at the end of trial treatment are recommended to assist participants to cope with their mixed emotions at this time, to outline a follow up care plan and to facilitate transition towards ‘cancer survivorship’.