Introduction: Clinical trials can be an important part of the treatment pathway in cancer care. However, there is a paucity of knowledge about the experiences of those who participate in clinical trials. Given the critical role of participants in recruitment to clinical trials and adherence to treatments and follow-up this is a major gap in knowledge.
Aim: We aimed to investigate the experiences of GU patients who have participated in a clinical trial.
Methods: This qualitative study was conducted across three sites in Australia. Consecutive patients were invited to take part when attending medical review for treatment or follow-up. There were three rounds of recruitment over 12 months which until thematic saturation was achieved. Semi-structured interviews conducted by telephone, with interviewer memos taken. Audio-recordings were transcribed verbatim and then coded then synthesised using a phenomenological approach.
Results: There were a total of 17 participants, four were newly started on a clinical trial, eight were currently receiving treatment, two in long-term follow-up, and two had withdrawn from their clinical trial. Themes identified related to the phases of clinical trial participation including: “making decisions”, “signing up”, “starting on a trial”, “having treatment” and “assessment goal posts”. Each participant arrived at their clinical trial site via a unique trajectory and their ongoing relationship with the clinical trials team were varied.
Conclusions: Partnerships with patients and their carers featured strongly across all themes, giving insight into the lives of those experiencing care from participating in clinical trials. This study provides insights to inform clinical trial designs, communication about clinical trials, and care of patients when they are considering clinical trial participation.