Quality of Life in Long-Term Survivors with advanced EGFR-Mutated NSCLC

<bold>Introduction:</bold> A small subgroup of patients with advanced NSCLC harboring an activating mutation in the epidermal growth factor receptor gene (EGFR+) survives more than 3 years. There is little information about how these patients appreciate their gain in survival time. <bold>Objectives:</bold> To assess overall quality of life (QoL) and treatment satisfaction from a real-world population of long-term survivors with advanced EGFR+ NSCLC. <bold>Methods:</bold> This is a multicenter mixed methods observational cohort study, including all patients within the Northern-Netherlands diagnosed with advanced stage EGFR+ NSCLC, diagnosed before January 1, 2019, alive at the start of the study in July 2021. We assessed QoL and treatment satisfaction using questionnaires (EORTC QLQ-C30, LC13, EQ-5D, CTSQ) and semi-structured interviews. <bold>Results:</bold> Of 11 identified patients, 10 were eligible. Median duration of TKI administration was 40 months (range 31-94). General QoL was fairly high, with a median QLQ-C30 global health status of 75.0 and median EQ-5D VAS of 72.5. Patients were very satisfied with therapy (median CTSQ score 91.1). Patients perceived their terminal disease as chronic disease and long-term TKI treatment was tolerated well. Symptoms with a mean score of >25.0 on QLQ C30 /LC13 questionnaires (fatigue, pain, neuropathy) were different from those reported in the interviews (alopecia, nail, and skin problems). Patients with symptoms from brain or bone metastases reported inferior performance. <bold>Conclusions:</bold> Long-term survivors of EGFR+ NSCLC tolerate long-term TKI treatment well and are satisfied with therapy. The validated questionnaires originate from the chemotherapy era and are less appropriate for assessing performance following long-term EGFR treatment.