Aims: To report the experience of recruitment to a randomised controlled trial evaluating the effectiveness of a formal advance care planning intervention (ACP) in patients with advanced cancer.
Methods: Eligible participants entered into the trial as dyads: a person diagnosed with advanced cancer plus a nominated family member or friend. 210 dyads will be randomised to receive usual care or usual care plus ACP. The research team systematically recorded the inclusion and exclusion of potential participants, including reasons for ineligibility and motives for refusal. Differences between participants and non-participants was also explored, including patient (gender, age) and situational (referring oncologist, study site, researcher) factors.
Results: During the period from April 2014 to July 2015, 162 participant dyads were randomised. 447 patients eligible for participation were identified and approached by a study researcher. However, after further screening, 333 (74%) were eligible for study participation but only 174 (52%) of eligible patients consented to participate. The chief reason for non-participation was ‘not interested’ (15.9%). The challenges to implementation of the research and recruitment will be presented, as well as data regarding screening, inclusion and exclusion of participants. Studies in the literature have reported participation rates between 53 and 99%.
Conclusions: Many patients with advanced cancer do not engage with opportunities for ACP. While better ACP interventions may benefit the proportion who does participate, investigations of the demographic, disease and other factors contributing to patients’ refusal to participate in ACP studies are needed. Based on our experience, we have identified a number of challenges to engaging this population and suggestions for future studies in this area are made.