Abstract Rationale This first of a kind study utilised real-world digital data to investigate insights from a public Facebook group for people affected by FLD. Methods Two text mining programs were used to analyse topics and build concept/knowledge maps. Semantic and relational extraction analysis was conducted on a sample of patient- and caregiver-generated posts from 23 random dates over 18 months. Results 1543 posts were analysed from 656 different posters: male/female (189/467), patient/caregiver (448/208), country of residence and whether posting a comment/question (192) or answer/reply (1350). Analysis revealed six major themes: oxygen use; transplant eligibility; side-effect management; emotional distress; caregiver burden; peer reassurance and validation as a major form of psychological support. Conclusion To our knowledge this is the first study of peer-to-peer communication in an online FLD community. Social media provides valuable, real-time windows into the lived experience of patients/caregivers, revealing practical and emotional thoughts, worries and challenges often overlooked in patient resources. Posts and comments from the USA, UK, Europe, Australia, South Africa and the Asia Pacific region provide a global view of real-world, unprompted thoughts, feelings, concerns, questions and challenges with respondents giving advice, possible solutions along with support and encouragement. Concept and knowledge maps give clinicians a unique chance to truly enhance respiratory patient care, by being able to build resources that accurately address the most posted questions. These insights can inform communication strategies, identify gaps in patient education, and support development of targeted resources that fully address the real concerns, worries and fears. This approach offers a novel way of addressing what is truly important to patients in the real-world and addresses a clearly unmet clinical need. Integrating this real-world patient voice into clinical care pathways has the potential to improve patient-centered outcomes in FLD. This abstract is funded by: None
Sandford et al. (Fri,) studied this question.