Patients’ and partners’ views of care and treatment provided for metastatic castrate resistant prostate cancer in the UK

Objective Documentations of the experiences of patients with advanced prostate cancer and their partners are sparse. Views of care and treatment received for metastatic castrate resistant prostate cancer (mCRPC) are presented here. Methods Structured interviews conducted within 14 days of a systemic therapy for mCRPC starting and 3 months later explored: treatment decisions, information provision, perceived benefits and harms of treatment, and effects of these on patients’ and partners’ lives. Results Thirty-seven patients and 33 partners recruited from UK cancer centres participated. The majority of patients (46%) reported pain was their worst symptom and many wanted to discuss its management (baseline-50%; 3 months-33%). Patients and partners believed treatment would: delay progression (>75%), improve wellbeing (33%), alleviate pain (˜12%) and extend life (15% -patients, 36% -partners). At 3 months most men (42%) said fatigue was the worst treatment-related side effect (SE), 27% experienced unexpected SEs, and 54% needed help with SEs. Most patients received SE information (85% written; 75% verbally); many additionally searched the internet (33%-patients; 55%-partners). Only 54% of patients said nurse support was accessible. Conclusion Pain and other symptom management is not optimal. Increased specialist nurse provision and earlier palliative care links are needed. Dedicated clinics may be justified.