Patient experience and shared decision-making in HPV-positive oropharyngeal cancer: A systematic review of qualitative and quantitative evidence

Introduction: Human papillomavirus (HPV)-related oropharyngeal cancer generally has a good prognosis and can be successfully treated with different modalities (including de-escalation); therefore, shared decision-making regarding treatment has a special role. We aimed to assess how the patients experience this diagnosis in light of optimizing shared decision-making. Materials and Methods: MEDLINE, Embase, CINAHL, PsycINFO, and Scopus were searched in two systematic reviews (CRD42023484134 and CRD42024501211). Studies were included if they described how patients with HPV-positive oropharyngeal cancer experience their illness and what factors they consider when confronted with a treatment decision. A results-based convergent synthesis design was adopted to analyze qualitative and quantitative evidence separately, then integrated through a narrative synthesis approach. Results: Nine of the 1978 articles met the selection criteria, resulting in a total of 392 patients being included. Five factors influencing patient decision-making were identified from the quantitative evidence: priority for cure and survival, and preference for de-intensification, which resulted in top-ranked issues for over 65% and 73% of patients who expressed them, respectively. Three qualitative themes were identified to encapsulate patient experiences, encompassing domains related to receiving and dealing with the diagnosis, decision-making, and perception of the impact of treatments. Based on these findings, a prompting list was created as a suggested communication toolkit for clinical practice. Conclusions: Our systematic review of the literature highlighted the multifaceted and complex experiences of patients facing the diagnosis of a curatively treatable HPV-positive oropharyngeal cancer. Our findings should be considered for optimal shared decision-making in clinical practice.