AB0916-PARE KNOWLEDGE OF DISEASE, DIAGNOSIS, ADHERENCE AND IMPACT OF RESEARCH IN PATIENTS WITH INFLAMMATORY ARTHRITIS

2021 
Background: The diagnosis and treatment of inflammatory arthritis has been transformed largely by the development of drugs that target specific molecules of the immune system. However, these changes have increased the complexity of the mechanisms of disease, its treatment and patients understanding. Patient education is needed in this area to facilitate decision making and to facilitate strong patient-partnerships in research. Objectives: The aim of this study was to examine the level of understanding of inflammatory arthritis patients and the need for strong patient-partnership in research. Methods: An online anonymous survey addressed questions about diagnosis, routine tests, medications and how they work, medication adherence, disease flare, heredity, pregnancy, and patient involvement in research. Results: There were 1,873 respondents, 1416 of which had inflammatory arthritis (IA)-RA (65.8%) and PsA (34.2%). They were predominantly female (RA 86%, PsA 85 %), aged 55±13 and 50±12. Less than 35% of patients had an understanding of diagnostic tests, what was measured and the implication for disease, with 75.5% also concerned about heredity. There was a high level of understanding of how specific medications treat inflammatory arthritis (72.9%). Adherence was also very high (>87%), with the main reasons for stopping medication without the advice of their clinician, ‘feeling better’ and ‘side effects’ however a significant proportion of patients (69.9%) reported a disease-flare following cessation of medication. Patients of childbearing age (69%) were also concerned that inflammatory arthritis reduced their chances of getting pregnant, with only 8% believing arthritis medications were safe to take during pregnancy. Finally, only 9% of patients had ever been asked to participate in a research study. Conclusion: This study demonstrates a need for the development of stronger patient-partnerships with clinicians and researchers in relation to patient education and engagement with research, to create a platform where patients can have meaningful input and involvement in future research studies. Acknowledgements: We wish to thank all the patients who contributed to this study Disclosure of Interests: Mary Canavan: None declared, Viviana Marzaioli: None declared, Alex Donnelly: None declared, Siobhan Wade: None declared, Alexander Fraser: None declared, Tim O’Sullivan: None declared, Sinead Harney: None declared, Arthritis Ireland: None declared, Douglas Veale Speakers bureau: Abbvie, Janssen, Novartis, MSD, Pfizer, UCB, Consultant of: Abbvie, Janssen, Novartis, MSD, Pfizer, UCB, Grant/research support from: Janssen, Abbvie, Pfizer, UCB, Ursula Fearon Speakers bureau: Abbvie, Grant/research support from: Janssen, Abbvie, Pfizer, UCB
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