Work

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

Year: 2025

Type: article

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.

Source: Rheumatology Advances in Practice

DOI: 10.1093/rap/rkaf140

Authors: Sarah L Mackie, Pallavi Arun, Vandana Padmanabhan, Alvaro Arjona, Joyce A Kullman

Institutions: University of Leeds, Leeds Teaching Hospitals NHS Trust, Novartis (Spain), Vasculitis Foundation

Language: English

Topic: Vasculitis and related conditions

Subfield: Pulmonary and Respiratory Medicine

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $2,974