Motivations and experiences of patients with advanced cancer participating in Phase 1 clinical trials: A qualitative study

Abstract

Background: Persons with advanced cancer may participate in Phase 1 clinical trials – first-in-human trials that are conducted with the main objectives of safety and dosing. The motivations for participation are not well understood and may include hope for cure. Aim: To explore the perspectives of persons with advanced cancer in order to understand the motivations for participating in Phase 1 clinical trials, experiences while being on trial and views on palliative care provision. Design: Qualitative study with a constructivist stance, using thematic analysis based upon the grounded theory approach. Setting/participants: 20 persons with advanced cancer who were participating in a Phase 1 clinical trial. Results: Many participants described how Phase 1 clinical trial participation was their last hope, as they were cognisant of their advanced disease. Information-seeking needs differed – some needed comprehensive information while others relied on the doctor’s recommendation. Participants experienced varied negative and positive physical and psycho-emotional concerns, and needed to draw on multiple sources of support such as family, friends and healthcare professionals. Some could list potential benefits of palliative care but felt they did not require it yet. The overarching theme was hope and positive thinking as a way of coping. Conclusions: The concepts of hope as a way of coping and the supportive presence of healthcare professionals could be weaved into a future model of palliative care to improve the illness journey for patients considering Phase 1 clinical trial participation and other persons with advanced cancer.