A Qualitative Study of Patient and Caregiver Perspectives on Locally Advanced Head and Neck Cancer in the United States

Locally advanced head and neck squamous cell carcinoma (LA-HNSCC) has major physical and psychosocial burdens. Although treatment challenges are well recognized, few studies have explored the full LA-HNSCC experience from first symptoms through to post-treatment recovery and survivorship. This exploratory, qualitative study sought to understand patient and caregiver perspectives across the LA-HNSCC journey. US adults with lived experience of LA-HNSCC (seven patients; two caregivers) participated in Johnson & Johnson’s Head & Neck Cancer Patient Engagement Research Council via virtual focus groups and online bulletin board activities. Transcripts and written responses were thematically analyzed using an a priori framework of three key stages: diagnosis and treatment planning, treatment, and post-treatment recovery and survivorship. Diagnostic journeys varied, with delays to diagnosis commonly perceived by participants as being attributed to multiple factors, including misinterpreted symptoms, difficulty accessing specialists, and limited provider awareness. Participants reported fear, uncertainty, and information overload during early decision-making. Treatment was described as burdensome, with side effects from radiation and chemotherapy leading to profound functional impairments affecting eating, swallowing, speech, and energy levels. Post-treatment long-term effects such as dry mouth, hearing loss, peripheral neuropathy, and anxiety about recurrence persisted and were often unexpected. Throughout these challenges, participants found strength, encouragement, and hope in peer support networks and valued knowledgeable and empathic communication with providers, as well as access to clear and digestible information; in particular, participants recommended early mental health support, tailored communication, and access to peer mentorship services. These exploratory, qualitative insights highlight unmet informational, psychosocial, and support needs in LA-HNSCC. Patients and their caregivers reported experiencing substantial, long-lasting physical and mental health effects that providers should be aware of to better support and empower patients throughout the care experience. A graphical abstract and patient journey infographic are available for this article. Infographic Head and neck cancer and its treatments can affect important bodily functions such as eating, speaking, and swallowing. The journey of head and neck cancer diagnosis and treatment can be challenging for both patients and their caregivers, including physical side effects and mental health impacts. This study asked a small group of patients with locally advanced head and neck cancer and caregivers to describe their experiences from the first signs of illness through treatment, recovery, and survivorship. Seven patients and two caregivers participated in online focus groups and written activities to share their perspectives. Many participants said they experienced delays before getting a correct diagnosis. Their symptoms were sometimes mistaken for more common issues, and it could be difficult to access specialists. This uncertainty often led to fear and emotional stress. Participants also felt overwhelmed by the amount of information they were given and the tasks and appointments they had to complete before starting treatment. Radiation and chemotherapy treatments led to painful and exhausting side effects that made daily life challenging. After treatment finished, many participants continued to experience unexpected long-lasting effects, including swallowing problems, hearing changes, nerve issues, and anxiety about the cancer returning. Participants found support, encouragement, and hope for the future in talking to other patients, sharing their experiences, and putting energy into healthy lifestyle factors. They valued clear information and access to emotional support. Participants recommended using patient support and mentorship networks, including organizations such as Imerman Angels and the Head and Neck Cancer Alliance.