Abstract 1343P
Background
Patients and caregivers increasingly use social media to seek and share information around disease-related experiences. Lung cancer is the most common cancer globally, affecting the lives of >2 million patients. This observational study analysed social media trends using social listening to gain insight into QoL impacts and perceptions in advanced lung cancer.
Methods
Data were collected retrospectively (June 2019–May 2020) from open-access blogs, forums, and social networking sites across 14 European countries. Conversations containing lung cancer and non-small cell lung cancer (NSCLC)-specific terms were extracted using social media aggregator tools. The information was filtered to a contextualised dataset by automated relevancy algorithms and manual review. Random sampling procedures generated the final dataset for analysis.
Results
Of 1360 conversations, of which 100 concerned QoL, patients and caregivers were the main stakeholders (42%). Emotional burden was the primary QoL impact (70%), associated with all stages of the patient journey. At diagnosis, patients felt overwhelmed by the amount and complexity of information and discouraged by survival statistics. Feelings of stigma around smoking history were common, with patients feeling blamed for their condition. Awaiting test results and relapse led to fear and anxiety; unavailability of effective post-relapse treatments caused additional distress. Some patients felt abandoned by physicians due to lack of empathy and communication. Physical QoL impacts were discussed in 38% of conversations, including side effects and long-term physical disability. Symptoms highlighted included muscle pain, breathlessness, and fatigue. Social wellness was mentioned in only 2% of conversations. Improved QoL was discussed as a treatment goal in 9% (n=539) of conversations about clinical endpoints.
Conclusions
This analysis identifies emotional burden as the main QoL impact of lung cancer, followed by physical impacts. Despite some limitations inherent to social listening, this study provides valuable insights into the lung cancer experience and highlights patients’ desire for greater physician empathy.
Clinical trial identification
Editorial acknowledgement
Medical editorial assistance was provided by Sara Henriques, of Chameleon Communications, London, UK, which was funded by Novartis, East Hanover, NJ, USA.
Legal entity responsible for the study
Novartis.
Funding
Novartis.
Disclosure
J. Chauhan: Financial Interests, Personal, Full or part-time Employment: Novartis. A. Sagkriotis: Financial Interests, Personal, Full or part-time Employment: Novartis. S. Aasaithambi: Financial Interests, Personal, Full or part-time Employment: Novartis. A.C.F. Rodrigues: Non-Financial Interests, Personal, Training: AstraZeneca; Non-Financial Interests, Personal, Advisory Board: MSD; Non-Financial Interests, Personal, Advisory Board: BMS; Non-Financial Interests, Personal, Advisory Board: AstraZeneca; Non-Financial Interests, Personal, Advisory Board: Boehringer Ingelheim; Non-Financial Interests, Personal, Advisory Board: Roche. All other authors have declared no conflicts of interest.