RESUMO
BACKGROUND: Palliative care patients are inherently difficult to recruit to and retain on studies. Even when patients are recruited, it is hard to complete studies with sufficient data. There is a dearth of literature specific to men with castrate resistant prostate cancer (CRPC) and the clinical trials coordinator/research nurse's perspective in improving trial outcomes in palliative care. Objectives To describe the lessons learnt (by the nursing research team) from a prospective cohort study of men with CRPC and the practical implications for future research in this area. METHODS: A pilot feasibility cohort study that followed patients with CRPC from referral until death. The participants completed questionnaires while the researcher documented treatments, disease status and symptom burden. The recruitment methods, data quality and results were analysed. RESULTS AND DISCUSSION: Several lessons have been learnt with regard to facilitating trial recruitment and design. These lessons are: the importance of building relationships with local urology teams, including all men with the diagnosis of CRPC as documented by a medical oncologist or urologist, reducing questionnaire burden, capturing symptom scores in clinic, actively following up patients by phone, and recording all reasons for drop-out or lost to follow-up. These lessons can now be implemented to improve future studies involving this demographic.