Needs Assessment for a Decision Aid in Oral Cancer Requiring Major Resection and Reconstructions

Objective Treatment of advanced oral cavity cancer necessitates ablative and reconstructive surgery that can be life‐altering, creating nuanced priorities between the desire for survival and quality of life. This study sought to describe currents practice of shared decision‐making among patients with advanced oral cavity cancer and determine the need for a decision support tool. Study Design Cross‐sectional, convergent, mixed methods study from 2020 to 2023. Setting Two major Canadian academic centers. Methods Semi‐structured interviews were conducted and interpreted via inductive thematic analysis of preoperative and postoperative patients with locoregionally advanced oral cavity cancer. Qualitative findings were integrated with data obtained from validated instruments that examined shared decision‐making (SDM‐Q‐9), decisional conflict (Decisional Conflict Scale; DCS), and decision‐making self‐efficacy (Ottawa Decision Self‐Efficacy; ODSE). Results The median age of the 37 participants was 67 years (SD: 11). Qualitative themes suggested that the following influenced care decisions: (1) approaches to information delivery, (2) preoperative experiences impact decision‐making, (3) perceived knowledge gaps and negative emotions, and (4) fear of cancer. Seven patients (18.9%) had clinically significant decisional conflict (DCS > 25) despite high levels of decisional self‐efficacy (mean ODSE 95.1, SD:7.9). Greater perception of shared decision‐making ( r = −0.328, P = .048) and decisional self‐efficacy ( r = −0.687, P < .001) were correlated with lower decisional conflict. Recommendations for future decision‐making tools included: (1) wide accessibility, (2) timeline of treatment events, (3) incorporate components that activate shared decision‐making and integrate the clinician‐patient dyad, and (4) promote conversation around difficult topics. Conclusion These findings support the need for integrated and improved tools to promote shared decision‐making.