POS0055-PARE UNDERSTANDING UNMET NEEDS IN GIANT CELL ARTERITIS (GCA) AND POLYMYALGIA RHEUMATICA (PMR) USING SOCIAL MEDIA: A PATIENT AND CAREGIVER PERSPECTIVE
Authors: N. Parashar, P. Arun, S. Sharma, K. Arora, V. Padmanabhan, A. Arjona
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Patients are increasingly using social media to share their disease experience. Analysing social media conversations of patients and caregivers can provide useful insights to understand real-world perspectives and thereby improve quality of healthcare.[1] Giant cell arteritis (GCA) and polymyalgia rheumatica (PMR) are related systemic inflammatory disorders, which may occur independently or simultaneously, usually affecting older adults.[2] Both diseases have a major negative effect on the quality of life (QoL) due to their impact on the physical and emotional well-being of patients. <h3>Objectives:</h3> To understand the real-world patient journey and identify the unmet needs of patients with GCA and/or PMR through social media listening. <h3>Methods:</h3> Social media content originating from the United States (US) and Germany in both English and German language were extracted for GCA and PMR for the period between August 1, 2022, and August 1, 2023. Sprinklr tool was used to download publicly available social media posts, using a pre-specified broad search query for GCA and PMR. The extracted data were filtered by platforms catering to patient, caregivers and healthcare professionals (HCPs). Duplicate records, broken URLs, news, retweets and blogs (i.e., newsletters, stocks) were excluded to obtain insightful data. Natural language processing was used to assess the relevance of posts, followed by manual analysis of filtered data to identify and map key themes and insights from conversations of patients, caregivers and HCPs. <h3>Results:</h3> In total, 21,844 conversations were extracted, of which approximately 1001 filtered posts were manually analysed to derive insights. Of the total identifiable reporters (n=517), 90% (n=418) were from the US and were mostly females (65%). Among the identifiable reporters, 63% of the conversations were related to PMR, 16% for GCA and another 16% related to both GCA and PMR. The most common theme of conversation among patients and caregivers was 'treatment' (33%), followed by symptoms (13%), HCP visits (10%), diagnosis (7%) and impact on QoL (7%). The lack of safe and effective treatment options that could keep the disease in remission was the pain point discussed among patients. The unmet needs and concerns expressed by patients were mostly related to HCPs (42%) and treatments (36%). Among the HCP-related unmet needs, lack of disease awareness (14% &amp; 30%), delayed diagnosis (19% &amp; 24%) and HCPs being dismissive about symptoms (14% &amp; 22%) were the major concerns among PMR (n=43) and GCA (n=37) patients, respectively. These three concerns were also reported by patients (n=25) with both PMR and GCA (44%, 36% and 32%, respectively). Of the treatment-related unmet needs reported by patients and caregivers, side effects (24% &amp; 29%), lack of effective treatments (30% &amp; 14%) and difficult steroid-tapering journey (24% &amp; 14%) were the major concerns expressed in the PMR (n=46) and GCA-related (n=14) conversations. In responses related to both PMR and GCA (n=31), these concerns were expressed by 42%, 26% and 13%, respectively. Patient sentiment around various treatment options (n=297) available for PMR and GCA was negative (61%), major drivers for which include side effects/intolerability, inefficacy/waning efficacy and flare-ups during steroid tapering. From the overall responses related to treatment perceptions (n=41), corticosteroids (CS) had a relatively negative perception (35%), whereas biologics had a more positive perception (27%) and were perceived as a safer alternative by the patients. The burden of comorbidities associated with the use of CS was also a recurrent concern. <h3>Conclusion:</h3> To our knowledge, this is the first ever social media-based study exploring the perspectives of patients with GCA and PMR. The insights obtained via social media listening reveal that PMR and GCA patients and caregivers express a large unmet need for alternative safe and effective treatment options. PMR and GCA patients and caregivers also manifest the need for greater awareness among HCPs for timely diagnosis and referral. <h3>REFERENCES:</h3> [1] Zakkar MA, Lizotte DJ. <i>J Healthc Inform Res</i>. 2021;5(4):382-400. [2] Weyand CM, Goronzy JJ. <i>N Engl J Med</i>. 2014;371(1):50-7. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> Nikita Parashar Novartis, Pallavi Arun Novartis, Sakshi Sharma Novartis, Kanika Arora Novartis, Vandana Padmanabhan Novartis, Alvaro Arjona Novartis.