Advancing Education, Research, and Quality of Care for the Head and Neck oncology patient.
Objectives: Treatment of locoregionally advanced oral cavity cancer necessitates major ablative and reconstructive surgery that can be life altering for patients. Shared decision-making incorporates patient values and preferences with the medical expertise of the treating surgical and healthcare team. This study sought to describe the current practice of shared decision-making within the care of patients with advanced oral cavity cancer in order to elucidate areas for improvement.
Methods: We performed a cross sectional, convergent, mixed methods study of patients with locoregionally advanced oral cavity squamous cell carcinoma from February 2020 to March 2023 at two major academic centers in Canada (n=37). Patients scheduled for ablation and free tissue reconstruction, or were in the post-operative surveillance period, were eligible. Patients were recruited through a purposeful sampling approach to capture age, gender, comorbidity burden, and the pre- versus post-operative periods. Semi-structured interviews were conducted, and transcribed data was interpreted via inductive thematic analysis. Themes were subsequently organized via previously established shared decision-making frameworks. Qualitative findings were triangulated with quantitative data obtained from validated health measurement instruments that examined the self-reported perception of shared decision-making (SDM-Q-9), decisional conflict (decisional conflict scale; DCS), and decision-making self-efficacy (Ottawa Decision Self-Efficacy; ODSE).
Results: Key qualitative themes included: 1) timing and approaches of information delivery, 2) pre-operative experiences impact decision-making and impact perceived power, 3) knowledge gaps and negative emotions, and 4) fear of cancer impact the decision-making process. An additional, period-specific theme focusing on the impact of COVID-19 also highlighted the need for adequate mental health support.
Overall, patients described high levels of perceived shared decision-making, with mean SDM-Q-9 scores of 86.3 (SD: 18.3). While the overall decisional conflict was moderate (mean DCS 10.4, SD: 13.3), 7 patients (18.9%) had clinically significant decisional conflict (DCS > 25) despite high levels of decisional self-efficacy (mean ODSE 95.1, SD: 7.9). Triangulation supported these findings, with the majority of patients reporting feeling involved in the decision-making process. Some patients described significant decisional burden, especially when faced with potentially unknown outcomes. Greater perception of shared decision-making (r = -0.328, p=0.48) and decisional self-efficacy (r = -0.687, p<0.001) were correlated with lower decisional conflict. There was no correlation between age and perception of shared decision-making, decisional conflict, or decisional self-efficacy (mean 67.6 years, range 43-88).
Multiple key recommendations for future decision-making tools were apparent: 1) wide accessibility, 2) flexible and fluid timeline for use, 3) incorporate components that activate shared decision-making and integrate the clinician-patient dyad, and 4) promote conversation around conversationally difficult topics (for example, end of life care, short and long term disability).
Conclusion: Advanced oral cavity cancer engenders significant distress among patients despite established high levels of shared decision-making and decisional self-efficacy. These findings support the need for integrated and improved tools to strengthen and promote shared decision-making.