Retrospective analysis uncovers patient experiences with biologic therapies and weight management in psoriatic arthritis, indicating the need for tailored support.
Background/Aims Social media platforms are increasingly used by people with chronic conditions to share experiences, seek advice, and find community. These platforms offer a unique opportunity to explore and share real-world patient lived experiences. This study, from the British Consortium for Psoriatic Arthritis (BritPACT), aimed to analyse social media conversations about psoriatic arthritis (PsA), focusing on experiences of biologic therapies and weight management. Methods We conducted a retrospective analysis of publicly available social media posts collected between November 2022-October 2024. Data collection was carried out by White Swan, a registered charity (1176486), using the Socialgist aggregator to source posts from Reddit and other health-related forums, without geographic restriction. Posts were tagged using a custom-built natural language processing tool and a hierarchical taxonomy to classify content by domain. A structured sample of posts was selected for analysis within each domain. Data were analysed using the Million Minds AI health social insights platform, combining quantitative entity counts with qualitative thematic analyses (deductive and inductive). Ethical review was not required as data were publicly available and encompassed by White Swan’s data partnerships. Patient partners contributed throughout, including paraphrasing quotes to support anonymity. Results From 121,000 potentially relevant posts, a sample of 4,044 posts on biologics and 1,016 on weight management was included for analysis. Most posts (96%) were from Reddit. Patients described barriers to accessing biologics, including funding constraints, administrative hurdles, and geographical variability. Emotional and practical challenges were common when biologics lost effectiveness, with many expressing frustration, hopelessness, and uncertainty about switching treatments. Experiences with different biologic devices varied; some reported injection anxiety and others valued the reassurance of staff-administered infusions. Weight management discussions centred on dietary strategies (e.g. keto, fasting), pharmacological therapies (notably GLP-1 agonists), and the psychological impact of weight-related stigma. Table 1 summarises key themes. Conclusion Social media offers real-world insights into the lived experiences of people with PsA, highlighting emotional and practical challenges in treatment access, disease control, and weight management. Social listening has the potential to identify unmet needs and inform patient-centred care and policy. Limitations include platform bias, lack of demographic data, and the unstructured content. Disclosure J. Kimpton: None. L. Bell: None. M. Mapleton: None. C. Gollins: None. M. Brooke: None. E. Dures: None. J. Begum: None. A. Elliott: None. J. Bluett: Grants/research support; J.B. reports a research grant award from Pfizer. Other; J.B. reports travel/conference fees from Fresenius Kabi and Novartis. P. Ho: None. T. Gudu: None. J. Packham: None. S. Mukherjee: None. M. Jasim: None. A. Kelly: None. P. Heliwell: None. N. Gullick: Consultancies; N.G. reports consultancy fees from Abbvie, Alfasigma, Eli Lilly, Johnson & Johnson, Novartis, Takeda, UCB. Grants/research support; N.G. reports research grants from Abbvie, Astra Zeneca, Eli Lilly, Johnson & Johnson, Novartis, Takeda, UCB. Other; N.G. reports conference support Alfasigma, Eli Lilly, Novartis, UCB. L. Coates: Grants/research support; L.C.C. has received grants and research support from AbbVie, Amgen, Celgene, Eli Lilly, Janssen, Novartis, Pfizer and UCB.. Other; L.C.C. has worked as a paid consultant for AbbVie, Amgen, Bristol Myers Squibb, Celgene, Eli Lilly, Gilead, Galapagos, Janssen, Moonlake, Novartis, Pfizer and UCB, L.C.C. has been paid as a speaker fo. W. Tillett: Consultancies; W.T. reports consultancy fees from AbbVie, Amgen, BMS, Eli Lilly, GSK, Janssen, MSD, Novartis, Pfizer and UCB. Grants/research support; W.T. reports research grants from AbbVie, Amgen, BMS, Eli Lilly, GSK, Janssen, MSD, Novartis, Pfizer and UCB. Other; W.T. reports speaker fees from AbbVie, Amgen, BMS, Eli Lilly, GSK, Janssen, MSD, Novartis, Pfizer and UCB.
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