Oncology patients’ experiences in experimental medicine cancer trials: a qualitative study

Abstract

ObjectivesThe study aimed to explore patients’ experiences of experimental cancer medicine (ECM) clinical trials.DesignThe study’s design was qualitative. Two focus groups with patients were undertaken followed by semistructured interviews, to explore patients’ experiences of ECM clinical trials. Interviews and focus groups were audiorecorded and transcribed verbatim. Data were analysed using thematic analysis.SettingA regional cancer centre (tertiary care) in North-West England.ParticipantsTwelve patients (aged 52–79) participated in one of the two focus groups and 22 patients (aged 42–83) participated in interviews.Primary outcome measurePatients’ experiences of an ECM trial.ResultsFour main themes were identified from the analysis: decision making, information needs, the experience of trial participation and impact of trial participation. Subthemes are presented in the manuscript.ConclusionTo make fully informed decisions about trial participation, patients required the simplification of trial information and wanted more information about side effects, their response to trial treatment and the overall trial progress throughout the trial. Patients highlighted the need for improvement for the support provided to their family and friends.