ABSTRACT
Purpose: The COVID-19 pandemic led to delays in urologic cancer treatment. We sought the patient perspective on these delays. Methods We conducted a mixed methods study with an explanatory-sequential design. Survey findings are presented here. Patients from a Midwestern Comprehensive Cancer Center and the Bladder Cancer Advocacy Network provided demographic and clinical data and responded to statements asking them to characterize 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 consenting patients responded to the survey. Most were older than 61 years (77%) and male (66%). Their diagnoses included bladder (45%), prostate (30%) and kidney (20%) cancers. Median time since diagnosis was 6 months, 95% had plans for surgical treatment. Dominant reactions to treatment delay included fear that cancer would progress (50%) and relief at avoiding COVID-19 exposure (43%). Most patients reported feeling that their providers acknowledged their emotions (70%), yet 52% did not receive follow up phone calls and only 55% felt continually supported by their providers. Patients’ median distress level was 5/10 with 68% of patients reaching a clinically significant level of distress (≥4). Thematically grouped suggestions for providers included better communication (18%), more personalized support (14%), and better patient education (11%). 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.