Urologic oncology patient perspectives during COVID-19 treatment delays

PURPOSE: We sought to describe patient experiences during COVID-19 related delays in urologic cancer treatment. METHODS: We conducted a mixed methods study with an explanatory-sequential design. Survey findings are presented here. Patients from a Midwestern Cancer Center and the Bladder Cancer Advocacy Network (BCAN) self-reported via survey their experience of treatment delay, patient-provider communication, and coping strategies. We quantified patient distress with an ordinal scale (0–10), based on the National Comprehensive Cancer Network Distress Thermometer (NCCN-DT). RESULTS: Forty-four patients with bladder, prostate, and kidney cancers consented to the survey. Most individuals were male (n = 29; 66%) and older than 61 years of age (n = 34; 77%). Median time since diagnosis was 6 months. Dominant reactions to treatment delay included fear that cancer would progress (n = 22; 50%) and relief at avoiding COVID-19 exposure (n = 19; 43%). Most patients reported feeling that their providers acknowledged their emotions (n = 31; 70%), yet 23 patients (52%) did not receive follow-up phone calls and only 24 (55%) felt continually supported by their providers. Patients’ median distress level was 5/10 with 68% (n = 30) of patients reaching a clinically significant level of distress (≥ 4). Thematically grouped suggestions for providers included better communication, more personalized support, and better patient education. CONCLUSION: During the COVID-19 pandemic, a high proportion of urologic cancer patients reached a clinically significant level of distress. While they felt concern from providers, they desired more engagement and personalized care.