Palliative care knowledge and beliefs among patients with urothelial carcinoma and their caregivers

INTRODUCTION AND OBJECTIVE: Palliative care manages the symptoms, pain, and stress caused by a serious illness. Subspecialty palliative care has been shown to improve patient and caregiver quality of life in multiple randomized trials. However, palliative care is seldom used in urothelial carcinoma (UC), even in advanced cases. To address low use of palliative care, we aimed to study knowledge and beliefs among patients with UC and their caregivers. METHODS: We surveyed patients with UC and their caregivers through the Bladder Cancer Advocacy Network (BCAN) Patient Survey Network (PSN). Previously studied and validated questionnaires on palliative care knowledge and beliefs were administered. Patients were grouped by stage into non-muscle invasive (NMIUC), muscle-invasive (MIUC) and metastatic urothelial carcinoma (MUC). RESULTS: 281 of 1300 PSN participants completed the survey (22% response rate). 90% of respondents were patients with UC, with the remainder caregivers. Most caregivers were a spouse (79%) or child (18%). Nearly all respondents were white (97%), 80% were partnered, and most had either a college (33%) or graduate degree (37%). UC stage was 62% NMIUC, 28%, MIUC, and 11% MUC. PSN participants had accurate levels of palliative care knowledge. The median number of correct true/false questions for patients and caregivers was 13 (IQR 12- 14) and 14 (IQR 11.75-14), respectively (p=0.6). While beliefs were mostly positive, patients answered fewer Likert scale questions positively; 6 (IQR 4-6) vs 7 (IQR 5-7), p=0.03. Beliefs of patients diagnosed more recently were less positive compared to those diagnosed remotely (p <0.01). Recently diagnosed patients were significantly more likely to believe that palliative care was exclusively for people in the last 6 months of life and to associate palliative care with death (all p <0.02). CONCLUSIONS: Overall, BCAN PSN participants possess accurate knowledge and positive beliefs about palliative care. A notable exception is among patients most recently diagnosed with UC. A limitation of the study is the high level of education and engagement among participants in the survey network.