76 Background: Immunotherapy presents new challenges for effective patient engagement to ensure that irAEs are reported and treated appropriately. This study directly assesses how NSCLC patients in an online community… Click to show full abstract
76 Background: Immunotherapy presents new challenges for effective patient engagement to ensure that irAEs are reported and treated appropriately. This study directly assesses how NSCLC patients in an online community perceived their irAE education and experience of potential irAEs. Methods: PatientsLikeMe is an online community for patients to track and share their experiences with the goal of improving health outcomes across all conditions. For this study, US residents ≥ 18, with self-reported immunotherapy treatment for NSCLC were invited to a baseline survey at enrollment and follow-up survey after 3 months (Dec 2017-Aug 2018). Quantitative and qualitative analyses were performed. Results: Respondents (N = 72) were female (69%), white (94%), and mean age of 64.3 (SD 9.3). Current immunotherapy use was reported by 60 (83%) patients and prior use by 12. Most (66 [92%]) reported that a healthcare provider (HCP) shared information about irAEs before they started treatment and 47 (71%) sought additional information. 43 (60%) reported experiencing a potential irAE while on treatment, 34 (79%) of whom indicated reporting this to a HCP. Free-text responses revealed a need for more clarity on side effects and severity, and that lapses in patient-provider communication sometimes occurred. The 3-month follow-up survey was completed by 39/72 patients; 28 (72%) remained on immunotherapy, and 8 (21%) had stopped since baseline. Of the 20 patients (51%) who reported experiencing a potential irAE in the past 3 months, 15 had also reported this at baseline, and 13 reported this to a HCP. Free-text responses revealed that many patients opted to wait until the next scheduled appointment to report irAEs or they self-managed minor side effects. Conclusions: Patients reported satisfaction with information received and responded appropriately to potential irAEs, but also suggested a need to improve information and communication with care teams. As patients become more accustomed to their treatment, there may be changes in reporting of irAEs. As this data is from a self-selected convenience sample of patients, results may be limited in generalizability.
               
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