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Suepattra G. May, Caroline Huber, Alison R. Silverstein, Mark Linthicum, Jason Shafrin, Katie Brown, Upal Basu Roy and Jennifer Bright

Background: Targeted therapies for non-small lung cancer (NSCLC) have vastly improved survival and other outcomes for patients whose tumors have genetic mutations such as ALK, BRAF, EGFR, and ROS1. Identification of genetic mutations often indicates a mutation-specific course of therapy; however, the relationship between genetic mutation status, patient treatment preferences, and other determinants of patient value in NSCLC cancer care is not well understood. Methods: Qualitative study utilizing focus groups and in-depth interviews were conducted with metastatic NSCLC patients who had received systemic therapy. Interviews explored how patients valued and prioritized factors and attributes associated with NSCLC therapy. Interviews were audio-recorded, transcribed, and coded for key themes using MAXQDA qualitative data analysis software (VERBI, GmbH). Thematic analysis identified determinants of value that patients with genetic mutations considered most important in decision-making. Results: Of 19 total participants with metastatic NSCLC (mean [SD] age, 55.8 [12.6] years; 79% female), 15 (79%) reported a known genetic mutation. Most participants valued oncogene testing and indicated that they had developed a distinct identity based on their specific mutation. Further, participants in our study with identified mutations reported facing distinctly different decisions than those without known mutations. Participants also highlighted unmet needs for diagnosis, treatment, and support tailored to their patient subgroup, including a critical need for better provider training and awareness of genetic testing and mutation-specific treatment options. Across patient subgroups, mutation-specific social media and support networks were highly valued for the care and treatment information they provide, especially among those with rare mutations, limited treatment options, or less-experienced providers. Conclusions: Our study suggests important differences among NSCLC patients based on identified genetic mutations. As treatment for NSCLC evolves, so do the needs and preferences of patients, especially those with driver mutations. Our findings highlight the need for a better understanding of how mutation status may impact patient goals and preferences in order to provide the highest value care to each patient.