BACKGROUND: We evaluated priorities, expectations, and regret among patients treated on a phase II trial of de-escalated chemoradiation for human papillomavirus (HPV)-positive oropharyngeal cancer. METHODS: Eligibility included stage III/IV squamous cell carcinoma of the oropharynx, p16-positivity, age >/=18 years, and Zubrod score 0-1. Participants were surveyed with validated measures evaluating their treatment experience. RESULTS: Twenty-four of 27 (89%) patients participated with a median follow-up of 24 months. Twenty-three subjects (96%) selected "being cured" or "living as long as possible" as top priority. No patient reported any regret about the decision to enroll on a de-escalation protocol. Sixteen participants (67%) found retrospectively reported long-term swallowing function to be either better than or as originally expected. CONCLUSIONS: These data offer a baseline landscape of perspectives and priorities for patients treated with de-escalation for HPV-positive oropharyngeal carcinoma and provide support to the fundamental premise underlying ongoing efforts to establish a new standard of care.
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