MyCODE: a prospective evaluation of lay-language molecular tumor board protocols in precision oncology

Molecular Tumor Boards (MTBs) are a pillar of precision oncology, integrating results of extended molecular profiling into clinical care. Yet, their protocols are typically incomprehensible for patients. Systematic patient-facing communication has remained limited.

In the single-center study MyCODE, individually tailored lay-language MTB protocols were developed based on didactic and psychological principles and prospectively evaluated. Using questionnaires adapted and developed for this task, patients with cancer evaluated their individual protocols and overall experience. Treating physicians were surveyed separately.

Forty-three patients were enrolled, 33 (77%; 55% women; median age 65; patients with 10 different cancer entities) returned completed questionnaires. Of those, 82% shared the questionnaire with at least one additional person. Lay-language protocols were perceived as helpful (68% "very," 29% "rather"), well-structured (71% "very," 29% "rather"), and easily comprehensible (63% "very," 31% "rather") by most patients. 85% reported that the protocol improved their understanding of treatment decisions, and 94% perceived them as supportive even if the MTB failed to provide options for precision therapy. Additionally, 13 treating physicians received questionnaires, of which 9 were returned. Responding physicians rated the benefit for patients as high (44%) or very high (44%) and supportive (67%) or rather supportive (33%) for their personal work.

Providing patients with lay-language MTB protocols is feasible, accepted, and valued even in the absence of therapeutic options. The MyCODE approach seems to enable patient empowerment and to support patients and physicians in shared decision-making in precision oncology.