Abstract
Purpose
This study aims to explore the experiences of patients enrolled in a cancer-related clinical drug treatment trial utilising a qualitative focus-group methodology. Specifically, this study aimed to explore the impact of social and family support, the challenges and advantages of taking part in a clinical trial and the experiences of patients at the conclusion of the trial.
Methods
A qualitative study was conducted at a public hospital in Melbourne in 2008. A total of 14 participants were recruited. Three focus groups and two interviews were conducted with 13 patients who had completed a cancer-related clinical trial. Comments from a letter written by a trial participant were also analysed. Interviews were audio-recorded, transcribed and coded according to emerging themes.
Results
Information obtained was grouped around four main themes; making sense of trial participation, challenges of treatment in the context of clinical trial participation, support during trial participation and coping with trial conclusion. Participants experienced a mixture of hope, uncertainty and apprehension as they considered whether to take part in a clinical trial. At different stages of the trial they made sense of their participation by thinking about the possible benefits of participation. Trial participation was also associated with a number of emotional and practical challenges. Generally, participants were very positive about the support they received from health professionals, family and friends. The end of the trial was associated with a mix of emotions, including relief, disappointment, hope of future help, uncertainty and abandonment.
Conclusions
Clinical trial participation is a positive experience for many patients with cancer, although there are a number of associated practical and emotional challenges. Trial participants may benefit from closer follow-up from clinical trial staff, especially the treating doctor, assessment of support needs and help in re-evaluating the meaning of their trial participation if their initial hopes and expectations are not met.
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Acknowledgements
This study was funded by the Victorian Cancer Agency. Thank you to Michael Murphy from Market Access, Research and Consulting for facilitating and transcribing the focus group discussions and providing advice on qualitative data analyses. Thank you also to Pat Bugeja, Helen Crowe and Marian Lieshcke for assistance in recruiting patients into the study. We are grateful to all patients who took part in the study.
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Wootten, A.C., Abbott, J.M., Siddons, H.M. et al. A qualitative assessment of the experience of participating in a cancer-related clinical trial. Support Care Cancer 19, 49–55 (2011). https://doi.org/10.1007/s00520-009-0787-z
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DOI: https://doi.org/10.1007/s00520-009-0787-z