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.
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.
Authors: Julie Hepworth; Ann R R Robertson; Anita Jhunjhunwala; Glyn C Jarvis; Chris McVittie Journal: Support Care Cancer Date: 2010-06-20 Impact factor: 3.603
Authors: Diane A J van der Biessen; Merlijn A Cranendonk; Gaia Schiavon; Bronno van der Holt; Erik A C Wiemer; Ferry A L M Eskens; Jaap Verweij; Maja J A de Jonge; Ron H J Mathijssen Journal: Oncologist Date: 2013-02-21
Authors: Fiona A Miller; Robin Z Hayeems; Jessica P Bytautas; Philippe L Bedard; Scott Ernst; Hal Hirte; Sebastien Hotte; Amit Oza; Albiruni Razak; Stephen Welch; Eric Winquist; Janet Dancey; Lillian L Siu Journal: Eur J Hum Genet Date: 2013-07-17 Impact factor: 4.246
Authors: Hala T Borno; Brian M Bakke; Celia Kaplan; Anke Hebig-Prophet; Jessica Chao; Yoon-Ji Kim; Jan Yeager; Pelin Cinar; Eric Small; Christy Boscardin; Ralph Gonzales Journal: Pilot Feasibility Stud Date: 2019-11-07