SAT0566 LIVING WITH CHRONIC INFLAMMATORY AUTOIMMUNE DISEASE IN BRAZIL: THE PATIENT’S PERSPECTIVE
Authors: Wanda Heloísa Ferreira, Nilma Rodrigues de Oliveira, Gládis Lima, Mateus Rodrigues Alves, Mayari Eika Ishimura
Journal: Annals of the Rheumatic Diseases (2019)

<h3>Background:</h3> The patient's journey is a complex phenomenon. It includes all the stages, perceptions, and experiences that the patient goes through since the identification of the first symptoms of a given disease. Therefore, it is crucial to understand this journey as it may help to optimize the patient's quality of life, especially for those who live with chronic inflammatory autoimmune diseases such as Rheumatoid Arthritis (RA), Psoriatic Arthritis (APs) and Axial Spondyloarthritis (axSpA). <h3>Objectives:</h3> The aim of this study was to understand the journey of people living with rheumatic disease in Brazil and its impact on several different areas of the patient's life, including family planning, use of medications, and access to health care services and professionals. <h3>Methods:</h3> The data were extracted from an exploratory, descriptive and quantitative research, with primary data collection. It was performed between May 09, 2018 and August 01, 2018. The survey had 58 questions and it was available online for public participation through the GRUPARJ PETRóPOLIS website. <h3>Results:</h3> The survey was accessed by 1223 participants. The proportion of patients with RA, PsA, and axSpA were 70.97%, 17.42% and 11.61%, respectively. Most participants were female (87.64%) and 59.21% of all attendees were between 18 and 54 years old. Only 38.72% of the participants declared that they were working, while 32.34% admitted to being retired or on sick leave. About 60% of the attendees have taken more than a year to visit a rheumatologist and 48.08% received their diagnose after at least one year of the first symptoms. Nevertheless, once they started to visit a rheumatologist, more than two thirds do not have difficulty to schedule a visit with this specialist. In addition, participants are satisfied with the health care they receive and feel well informed about their treatment. At least half of the attendees used synthetic disease-modifying antirheumatic drugs to control their disease, 41.73% also used corticoids and 33.87% are on biologic drugs. Nevertheless, 37.24% and 17.35% of the participants classified their disease activity as moderate or high, respectively, thus not achieving the target of treatment from their own perspective. This may affect the patient's quality of life as reflected in the percentage of respondents suffering from emotional problems (46.62%) as well as in the proportion of patients having some or many difficulties to do daily activities. This scenario is impacted by the fact that more than half of the participants do not have access to another health care provider other than the rheumatologist to help manage their condition. This survey has also delved on the topic of family planning. Whit regards family planning, 50% of the women indicated an unplanned pregnancy (n=142). Moreover, 48.59% (n=69) of these women had never discussed with their rheumatologist about the desire to be pregnant. Furthermore only 13.38% (n=19) affirmed that their treatment during pregnancy was discussed between the rheumatologist and the gynecologist/obstetrician. <h3>Conclusion:</h3> Although most of the participants in this survey indicated a good level of satisfaction with the health care they receive, data also indicate opportunities for improving the patient's quality of life. Patients are satisfied with the access to the rheumatologist, drug treatment as well as the information they receive on physician's appointments. This work illustrates the complexity of these chronic inflammatory autoimmune disease and the importance of multidisciplinary treatment to manage it to impact positively the patient journey. <h3>Acknowledgement:</h3> This study was sponsored by UCB Biopharma (Brazil). <h3>Disclosure of Interests:</h3> Wanda Heloísa Ferreira Grant/research support from: UCB Biopharma, Nilma Rodrigues de Oliveira Grant/research support from: UCB Biopharma, Gládis Lima Grant/research support from: UCB Biopharma, Mateus Rodrigues Alves Employee of: UCB Biopharma, Mayari Eika Ishimura Employee of: UCB Biopharma