Exploring lived experiences in oral cavity cancer: An Asia-Pacific perspective on psychosocial challenges and opportunities for enhanced patient-centric care.
Authors: Hye Ryun Kim, Puma Sundaresan, Tracey E Nicholls, Hai-Ling Teng, Con Stylianou, Khoi Tuan Nguyen, Edwin Pun Hui, Yu-Chung Li, Jennifer Si, Ying Jie Yew, Regina Gowindah, Pei-Jen Lou
Journal: Journal of Clinical Oncology (2024)

12097 Background: Locally advanced oral cavity squamous cell carcinoma (LA OC SCC) is profoundly emotionally taxing, characterized by a dual burden of undergoing treatment and adapting to post-treatment changes. The research explores lived experiences including psychosocial aspects, to identify approaches to establish a resilient supportive system for patients to improve coping and reduce anxiety and distress. Methods: A total of115in-depth interviews were conducted across Australia, Hong Kong, South Korea, Taiwan and Vietnam. Informants were LA OC SCC patients who underwent surgery and adjuvant chemoradiotherapy, their caregivers, multidisciplinary team (surgeons and clinical, radiation and medical oncologists) and supportive care HCPs (nursing, case managers/care coordinators, psychologists, speech therapists, dietitians, and dentists). Interview guide design and thematic analysis were guided by the Psycho-Onco Emotional Anxiety (POEM) framework and the Capability, Opportunity, Motivation, Behaviour (COM-B) model. Results: The POEM framework illuminated patients’ lived cancer experiences, emotions and psychological thoughts and processes influenced by beliefs of the world, others and self which impact coping responses that maintain or drive anxiety. Key themes emerged: physical and functional impairments result in negative psychosocial impact; constraints hinder person-centered care communications with HCPs and interpersonal dynamics with significant others; and personal and interpersonal experiences result in negative coping, exacerbated by inadequate health services and social support. Multimodal therapeutic interventions for LA OC SCC lead to physical and functional impairments implicating psychosocial and psychosexual quality of life. LA OC SCC stigma, societal norms and highly socially constrained patients grapple with distress from inadequate psychosocial support. Furthermore, HCPs may have preconceptions of LA OC SCC patients hindering patient-centered approaches to care and management. In certain regions, insufficient hospital support systems exacerbate the toll of strained interpersonal relationships and caregiver burden on physical, psychological and emotional well-being. Consequently, treatment adherence, self-care and survivorship experiences of patients and caregivers are affected. Conclusions: Utilizing the POEM framework, the study delved into nuanced patient and caregiver-narrated experiences in 5 Asia-Pacific countries/territories with distinctive supportive care systems. Findings underscore the imperative of improving patient-centric care through enhanced psychosocial support for patients and caregivers, identifying specific areas where health services can be better equipped to support holistic patient health delivery, especially psychosocial health.