The psychosocial experiences of human papillomavirus (HPV) positive oropharyngeal cancer patients following (chemo)radiotherapy: A systematic review and meta‐ethnography

**Background:** The UK incidence of oropharyngeal cancer has quadrupled between 1990 and 2010, with up to 80% now linked to HPV. Disease onset in this subgroup is typically during middle age (40-55 years), younger than traditional HNC populations (65+ years). Although HPV-positive oropharyngeal disease is often locally advanced at diagnosis, it is responsive to radiotherapy (75-80% surviving 5 years). However, poor quality of life due to severe treatment side effects (e.g., dry mouth, difficult/painful swallowing) is common. Previous reviews of mixed HNC populations left gaps in understanding the distinct psychosocial experiences of the growing HPV-positive oropharyngeal cancer population following (chemo)radiotherapy.

**Methods:** Meta-ethnography methods based on Noblit and Hare were used. Systematic searches were conducted in five electronic databases (MEDLINE, PubMed, CINAHL, PsycINFO, Cochrane database) between 2010 and 2021, followed by citation searching. Eligibility criteria included qualitative HNC studies analyzing psychosocial experience or support needs during early recovery following (chemo)radiotherapy, with at least one-third oropharyngeal patients or patients aged 40-65. Quality appraisal used the CASP qualitative checklist. Data synthesis involved development of 3rd order constructs through reciprocal translation.

**Key Results:** From 4398 papers retrieved, 23 papers were included after screening. Five interrelated 3rd order constructs were derived: (1) 'gaps in continuity of support from healthcare professionals' — patients experienced feelings of abandonment and a 'void' of emotional support after treatment ended, with patients reluctant to contact HCPs due to stoicism and uncertainty about when to call; (2) 'changes to self-identity' — profound disruption to roles as parents, partners, and providers, with social identity affected by functional changes in speaking, eating, and drinking, social embarrassment, and perceived stigma of an HPV-positive diagnosis; (3) 'unrealistic expectations of recovery' — patients described the first weeks after treatment as 'like a nightmare', with depression disclosed by patients and the unexpected difficulty of recovery amplified when side effects initially worsened rather than improved; (4) 'finding ways to cope' — patients cultivated optimism despite uncertainty, used goal-setting, downward social comparison, and valued peer support ('When I met [another support group member] he said to me "it gets better". And that was probably one of the best things that ever happened to me'); (5) 'adjusting to life after treatment' — patients sought to regain control through problem-solving, acceptance, and modifying perspectives toward a 'new normal', with some finding benefits from 'giving back'.

**Clinical Implications:** The review found that HPV-positive oropharyngeal cancer patients require: specific support to cope with severe side effects and changes in self-identity; clear information guiding expectations around recovery timelines and return to work; access to tailored HPV-related information; support for patients as parents and for relationships; facilitation of well-matched peer support; and enhanced psychological support such as CBT and Acceptance and Commitment Therapy (ACT). The UK HNC MDT guidelines and tools like the Patient Concerns Inventory (PCI) and Macmillan Holistic Needs Assessment (HNA) may facilitate personalized care, but gaps remain in timely, tailored information and available support.