An individualized patient decision-making tool to improve decision making in non-small cell lung cancer: a mixed methods approach

Background Patients with non-small cell lung cancer (NSCLC) are asked to make decisions during their cancer journey, with a relevant impact on their quality of life, treatment adherence, and clinical outcomes. Improving shared decision-making can be complex, thereby damaging patient–doctor communication. Materials and methods We followed three developmental phases, conducting focus groups, semistructured interviews, thinking-out-loud sessions, and a questionnaire with patients and semistructured interviews with physicians. Interviews were audio-recorded, verbatim transcribed, thematically coded, and analyzed. Phase I consisted of an evaluation of decisional needs during medical consultations; phase II tested the comprehensibility and usability of the first, static individualized patient decision aid (PDA); and phase III beta-tested the feasibility of the second, dynamic PDA. Results Patients with NSCLC and oncologists agreed on the need to develop a tailored PDA to promote shared decision-making. Over the three phases, findings highlight that PDA can be a helpful decision tool to (i) provide clear and appropriate information to promote patients' knowledge and awareness, improving emotion regulation; (ii) assess patients' preferences and values, considering also if there is information that a patient do not desire to receive (i.e. survivorship rates); (iii) have a trustworthy relationship with the physicians; and (iv) involve caregivers in the process of care efficiently. Conclusion An online PDA for patients with NSCLC is proved to be a helpful tool for shared decision making, supporting clinical practice, treatment adherence, and clinical outcomes. A clinical trial will be started with newly diagnosed patients with NSCLC and their oncologists, involving the latest, dynamic version of PDA.