PARE0009 THE PHYSICAL AND EMOTIONAL BURDEN OF RHEUMATOID ARTHRITIS: DATA FROM RA MATTERS, A WEB-BASED SURVEY OF PATIENTS AND PHYSICIANS IN EUROPE AND CANADA
Authors: Rieke Alten, Neil Betteridge, Francesco de Leonardis, Nicole Tietz, Mariana Guerreiro, Mart van de Laar
Journal: Annals of the Rheumatic Diseases (2019)

<h3>Background:</h3> Rheumatoid Arthritis (RA) is a chronic inflammatory disorder that negatively affects the patients' health-related quality of life (QOL).<sup>1</sup> Despite much progress in addressing the burden of RA, a gap exists in terms of understanding 'what really matters' to patients with RA, and balancing patients' QOL aspirations with clinical targets in key treatment decisions. <h3>Objectives:</h3> This international survey investigated how RA affects the lives of patients according to the perceptions of both patients and healthcare providers (HCPs), in order to help health professionals attune their care on the domains that really matter to patients. <h3>Methods:</h3> Data were collected from patients with RA, and rheumatologists or HCPs who treat RA in Canada, France, Germany, Italy, Netherlands, Spain, Sweden, and UK using a structured, closed-ended questionnaire in their local language. Respondents for the survey were recruited from survey panels of verified unique responses, as well as through social media. Data were summarized in terms of both frequency and percentages of patients to understand the experience of patients living with RA on daily activities, relationships, work, and aspirations. <h3>Results:</h3> Overall, 5400 adult patients (81% female; mean age 52 years), and 808 rheumatologists or HCPs participated in the survey between November 2016 and February 2017. Of these, the highest proportion of patient and HCP respondents were from the UK (n=1250) and France (n=230), respectively. Overall, 52% of patients and 62% of HCPs believed that the emotional impact of RA is not well understood by people without the disease; whereas 46% of patients and 52% of HCPs had a similar belief with regards to the physical impact of the disease. Patients who felt that the impact of RA is less well understood by others expressed more negative feelings about every aspect of their life with RA. Important relationships with spouse or partner, children, family, friends, and colleagues were generally affected negatively. Almost half of the patients (48%) who participated in the survey reported that they were forced to take long-term leave/retirement or experienced slow career progress since being diagnosed with RA; more than 3 in 5 patients found exercising to be difficult; and almost 1 in 4 patients found difficulties in taking care of personal grooming. Aching/stiff joints, pain, and fatigue were the key physical barriers to activities for patients, and 65% of patients felt frustrated when they were unable to undertake or complete daily activities due to their disease. Two-thirds of patients wished to be able to accept their life with RA and do what they can to cope with it in the future. Over half of the patients (52%) had a hope that the physical impact of RA will be better understood in the future. <h3>Conclusion:</h3> Despite major advancements in the treatment of RA, the chronic disease continues to significantly affect many aspects of patients' lives, including relationships, career progression, daily activities, and ability to work. Both patients and HCPs felt that the physical and emotional impact of RA is not well understood by people without the disease. In line with a recently published study, pain, fatigue, and physical function remain primary barriers for patients to live a normal life and to participate fully.<sup>2</sup> In RA treatment decisions, patients' personal goals and patient-reported outcomes should be given greater consideration along with clinical targets. <h3>References</h3> [1] Wysocka-Skurska I, et al. Clin Interv Aging. 2016;11:1741-50. [2] Oude Voshaar MAH, et al. Arthritis Care Res (Hoboken). 2018Oct24. doi: 10.1002/acr.23799. [Epub ahead of print]. <h3>Disclosure of Interests:</h3> Rieke Alten Grant/research support from: Bristol-Myers Squibb, Speakers bureau: Bristol-Myers Squibb, Neil Betteridge Consultant for: Amgen, Eli Lilly, Grunenthal, GSK, Heart Valve Voice, Janssen, Roche, Sanofi Genzyme and Sanofi Regeneron, Speakers bureau: Amgen, Eli Lilly, Grunenthal, GSK, Heart Valve Voice, Janssen, Roche, Sanofi Genzyme and Sanofi Regeneron, Francesco de Leonardis Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Nicole Tietz Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Mariana Guerreiro Shareholder of: Eli Lilly and Company, Employee of: Eli Lilly and Company, Mart van de Laar Grant/research support from: Eli Lilly, Pfizer, Merck, AbbVie and Janssen Cilag, Consultant for: Sanofi Genzym, Eli Lilly, Pfizer, Merck, Abbvie and Janssen Cilag, Speakers bureau: Eli Lilly, Pfizer and Janssen Cilag