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

Mackie, SL.; Arun, P.; Padmanabhan, V.; Arjona, A.; Kullman, JA.

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

All Authors

Mackie, SL.

Arun, P.

Padmanabhan, V.

Arjona, A.

Kullman, JA.

LTHT Author

Mackie, Sarah

LTHT Department

NIHR Leeds Biomedical Research Centre
Rheumatology

Publication Date

2026

Item Type

Journal Article

Subject

GIANT CELL ARTERITIS , POLYMYALGIA RHEUMATICA , GLUCOCORTICOIDS , QUALITY OF LIFE

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 (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 experiences with HCPs and treatments. 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. Copyright © The Author(s) 2025. Published by Oxford University Press on behalf of the British Society for Rheumatology.