Living With ALK Fusion-Positive NSCLC: A French Nationwide Survey of the Psychosocial Impact Among Patients, Caregivers, and Health Care Professionals

Introduction The development of anaplastic lymphoma kinase (ALK) inhibitors transformed the management of ALK fusion-positive ( ALK+ ) non-small cell lung cancer (NSCLC) from a high-mortality disease to a more manageable chronic condition. Methods This quantitative, nationwide French survey collated information via online questionnaires from patients (n=85), caregivers (n=27) and healthcare professionals (HCPs; n=50) on the impact of ALK+ NSCLC on daily lives and psychosocial issues. Results Overall, 46 patients (54%) had received first-line and 39 patients (46%) second-line or later targeted therapy for a mean of 2.4 years. The most common disease-related challenges reported by patients and HCPs were psychological issues (56.5% and 78.0%, respectively), life planning difficulties (50.6% and 64.0%) and limitations in physical activities of daily life (40.0% and 48.0%), respectively. HCPs consistently underestimated the impact of ALK+ NSCLC on patients' daily lives, especially regarding psychological difficulties, issues with relationships and intimacy, and financial struggles. ALK+ NSCLC had a major impact regarding caregivers' psychological problems, difficulties in realising life plans, and professional difficulties. The most important patient-rated support and guidance needs were to establish a separate clinic dedicated to nonmedical problems, improve the systematic provision of wellness activities (e.g. yoga), make it easier to report adverse events to the medical team, provide psychological support, and enable exchanges with other patients (e.g. via discussion groups). Conclusions Our study highlights several measures that can be introduced to reduce disease burden and improve quality of life and, besides routine medical follow-up, markedly improve the overall patient journey through ALK+ NSCLC.