ArticleRheumatology advances in practice2026
Patient perspectives on life impact and unmet needs in giant cell arteritis and polymyalgia rheumatica: insights from social media.
Article in Rheumatology advances in practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
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 analysed social media posts from the USA and Germany between 1 August 2022 and 1 August 2023. A keyword search query retrieved posts addressing key research questions from various social media platforms using the 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%), healthcare professional (HCP) visits (10%), diagnosis (7%) and impact on QOL (7%). Among the mentions expressing treatment-related sentiment ( Conclusion: This novel social media listening study provides insights into the lived experiences 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 healthcare professionals.
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