“I have cancer during COVID; that’s a special category”: a qualitative study of head and neck cancer patient and provider experiences during the COVID-19 pandemic

PURPOSE: The COVID-19 pandemic has drastically changed cancer care delivery strategies. Patients with locally advanced head and neck cancer (LA-HNC) may be particularly affected by the COVID-19 pandemic, as they often undergo treatments that require daily clinic visits (e.g., radiation therapy). The goal of this study was to characterize the lived experience of LA-HNC patients and their healthcare providers during the COVID-19 pandemic. METHODS: LA-HNC patients who completed a full course of chemotherapy and radiation therapy during the COVID19 pandemic (N = 20) and LA-HNC healthcare providers (N = 13) participated in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed for qualitative themes. RESULTS: The COVID-19 pandemic had a significant impact on patients’ overall quality of life and health care. Results were organized in four main themes: (1) increased psychological distress; (2) exacerbated social isolation; (3) added stress in clinic for patients and providers; and (4) delays in health care. CONCLUSIONS: Findings highlight myriad ways LA-HNC patients and providers have been affected by the COVID-19 pandemic. Results can inform the development of supportive interventions to assist LA-HNC in managing COVID-19-related stress and unmet needs related to social isolation and in-clinic support. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-021-06773-x.