Examining the impact of community, knowledge, and shared support on the <i>EGFR</i> -mutated lung cancer care journey: Results from the first annual EGFR Resisters Patient and Caregiver Summit.

Abstract

e13781 Background: Social isolation, loneliness, and lack of shared support networks are associated with increased psychosocial burden, diminished quality of life, and suboptimal clinical outcomes in patients with cancer. Among patients with EGFR -mutated lung cancer, which comprises 10-15% of NSCLC cases diagnosed annually in the US, the need for community and shared purpose is accentuated by the niche nature of the diagnosis, pervasive societal stigma, and the uncertainty associated with a rapidly evolving paradigm. Thus, even as novel therapeutics improve survival, it is imperative that all clinical and humanistic patient needs are addressed to optimize the quality of patient-centered care. This is a principal mission of the EGFR Resisters lung cancer patient advocacy group. Methods: We conducted an informal survey of the EGFR Resisters patient and caregiver community to identify topics of greatest interest and unmet need. Based on survey themes, we designed and executed an inaugural multi-day summit, comprised of prominent keynote addresses, expert plenaries, breakouts, and dedicated opportunities for networking and community-building, in Chicago, IL from November 14-16, 2025. A total of 149 patients and caregivers attended (105 in-person, 44 virtually), as did 14 faculty members with expertise in thoracic medical oncology, surgery, radiation, research, palliative care, social work, and psychosocial wellness. We asked participants to complete a post-Summit evaluation, which employed both Likert scale and open response formats, to assess satisfaction and interest in future Summits. Results: Evaluation responses revealed the impact of the inaugural Summit and the exigent need for prospective efforts. Attendees rated their satisfaction with the Summit at 4.8 (on a 5.0 Likert scale) and indicated that the most meaningful aspects of the experience were ‘access to experts’ (39%), ‘community’ (34%), and ‘hope’ (14%). When asked to choose one word to describe the importance of the Summit, the most common responses were ‘community’ and ‘informative.’ As for areas of improvement or increased emphasis in future Summits, respondents expressed a desire for ‘more expert access,’ ‘more information on the latest data and therapeutic hot topics,’ and ‘greater opportunities for social interaction with fellow patients and caregivers.’ Conclusions: The 1 st Annual EGFR Resisters Patient and Caregiver Summit was highly rated by attendees and achieved demonstrable impact for patients living with EGFR -mutated lung cancer and their caregivers, headlined by the provision of access to experts, a summary of the latest data and treatment advances, and perhaps most profoundly, by opportunities to build community and establish shared hope. Attendee feedback will be utilized to design, develop, and deliver the 2 nd Annual Summit in 2026.