Abstract Background/Aims Polymyalgia rheumatica (PMR) affects over 200,000 people over the age of 55 in the UK but diagnosis rates are lower in the North of England compared to the South. With our charity partner PMRGCAuk, and by engaging patient groups, researchers, and health care professionals (HCPs), we aimed to uncover the causes of challenges to diagnosis, care and treatment of PMR in the North. Methods A Northern Outreach Lead (NOL) was appointed by PMRGCAuk to connect with the members of the PMR community including patients, HCPs, researchers and clinicians. A video comprising patient lived experiences, as told by them, was created. Finally, a series of multi-stakeholder events brought diverse people together to discuss system-level challenges. Qualitative thematic analysis of interviews with those involved in the project were also performed. Results Patients described PMR as an “isolating condition” with low public awareness. Guidelines appear to suggest a simple condition that is easily managed but patient experience does not often reflect this. Some of the confusing and contradictory messages were expressed in a poem, “Things we have heard about PMR”. It emerged that the lack of perceived alternatives to glucocorticoids was a major driver of disconnects within the system: between patients and clinicians, and between primary and secondary care. Conclusion By listening to patients and frontline clinicians, we unravelled some of the system-level factors perpetuating barriers to effective care and support from healthcare services. Narratives about PMR need to shift from “nothing can be done” to more positive and hopeful stories. Disclosure S.L. Mackie: Corporate appointments; Investigator on clinical trials for Sanofi, GSK, Sparrow. Consultancies; Consultancy on behalf of her institution for Roche/Chugai, Sanofi, AbbVie, AstraZeneca, Pfizer. Member of speakers’ bureau; speaking/lecturing on behalf of her institution for Roche/Chugai, Vifor, Pfizer, UCB, Novartis, Fresenius Kabi and AbbVie. Grants/research support; This project was funded by NIHR (NIHR205184). The views expressed are those of the authors and not necessarily those of the NIHR or the Depar; PI on STERLING-PMR trial, funded by NIHR HTA (NIHR131475). Other; Support from Roche/Chugai to attend EULAR2019 in person and from Pfizer to attend ACR Convergence 2021 virtually; patron of the charity PMRGCAuk. L. Coutin: None. P. Ganguly: Grants/research support; PG is supported by the Leeds Biomedical Research Centre (NIHR203331). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social care. S. Muller: None. H. Hodgson: Other; Was the chairman of Trustees for the charity PMRGCAuk. M. Tarr: None. D. Rowley: None.
Mackie et al. (Wed,) studied this question.