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

INTRODUCTION

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.

METHODS

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.

RESULTS

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.

CONCLUSIONS

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.