Patient perspectives on life impact and unmet needs in giant cell arteritis and polymyalgia rheumatica: insights from social media

Objective To ascertain the perspectives of caregivers and patients with giant cell arteritis (GCA) and/or polymyalgia rheumatica (PMR) and the impact of disease on quality of life (QOL) and identify their unmet needs through social media listening. Methods This retrospective study analyzed social media posts from the United States and Germany between August 1, 2022, and August 1, 2023. A keyword search query retrieved posts addressing key research questions from various social media platforms, using Sprinklr tool. Natural language processing was used to assess the relevance of the posts, followed by a manual analysis to identify themes, map key topics, and derive insights. Results Of 1001 unique posts, 517 were from patients or caregivers; these yielded 919 references to specific topics. Posts about PMR (65%) were more frequent than those about GCA (18%) or both (17%). The most common topics discussed by patients and caregivers were related to treatment (33%), symptoms (13%), health care professional (HCP) visits (10%), diagnosis (7%), and impact on QOL (7%). Among the mentions expressing treatment-related sentiment (n = 297), negative sentiment was predominant (61%) across PMR- and GCA-related posts. Glucocorticoids were perceived more negatively than biologics. Patients reported significant impact of the disease on their QOL. Unmet needs were mostly related to experience with HCPs and treatments. Conclusion This novel social media listening study provides insights into the lived experience of GCA and PMR. Patient conversations revealed multiple impacts on QOL and reflected a need for more effective, better-tolerated treatments and for greater disease awareness among HCPs.