Exploring lived experiences in oral cavity cancer: an Asia-Pacific perspective on psychosocial challenges and opportunities for enhanced patient-centric care

Abstract

PurposeLocoregionally advanced oral cavity squamous cell carcinoma (LA-OCSCC) has marked physical, psychological, and functional burden. Patients remain at high risk of relapse, often experiencing psychosocial distress. This study examined lived experiences of LA-OCSCC patients in the Asia-Pacific region to identify opportunities to reduce anxiety and improve coping strategies.Methods115 participants were interviewed across Australia, Hong Kong, South Korea, Taiwan, and Vietnam, including LA-OCSCC patients who underwent surgery and adjuvant chemoradiotherapy, their caregivers, and multidisciplinary care teams (clinical radiation and medical oncologists, supportive care specialists, nurse/case managers, psychologists, dietitians, speech therapists, and dentists). The Psycho-Onco Emotional Anxiety (POEM) framework informed research materials and analysis.ResultsPhysical and functional impairments from tri-modality treatment led to profound psychosocial distress, negative psychosexual well-being, and social withdrawal, diminishing quality of life. Patients also faced stigma associated with OCSCC and social constraints, including gender norms discouraging men from showing vulnerability or seeking support. Fear of recurrence driven by awareness of the aggressive and recurrent nature of OCSCC further exacerbates anxiety. Limited access to psychosocial care, coupled with a lack of recognition among patients and caregivers of its benefits, further restricted the implementation of patient-centered care.ConclusionDefining the psychological and emotional burden of LA-OCSCC is a crucial step toward enabling HCPs to recognize distress early and apply targeted screening strategies that strengthen patient support, engagement, and adherence to care.Implications for Cancer SurvivorsTimely and integrated psychosocial and rehabilitative care is crucial to restoring function and reducing anxiety, addressing the long-term effects of treatment and ultimately improving cancer survivorship.