POS0085-PARE CURRENT NEEDS, IMPACT AND PERSPECTIVE OF PATIENTS WITH ANKYLOSING SPONDYLITIS AND PSORIATIC ARTHRITIS

Abstract

BackgroundThe impact of spondyloarthritis (SpA) and psoriatic arthritis (PsA) is enormous.ObjectivesTo analyse in patients with SpA and PsA current 1) needs; 2) disease impact, and 3) patients’ opinion on treatments, patients-physicians relationship and disease information.MethodsNational survey promoted by CEADE (Spanish Coordinator of Spondyloarthritis Associations). A multidisciplinary working group composed by 1 rheumatologist, 2 patients members of CEADE with SpA and PsA and a methodologist was established. They designed a structured survey (20 minutes long), in electronic format to be answered by patients with SpA and PsA, aged 18 years or above. The survey was launched on April 28, 2021, using CEADE channels to communicate with members and followers, and was closed on June 30, 2021. Sociodemographic and clinical variables were collected (age, sex, disease duration treatments), and variables related to the objectives. A descriptive analysis was performed.ResultsThe survey included 543 patients with SpA (55% ankylosing spondylitis, 86% women, 61% aged 48-64 years, 25% with biological therapies) and 291 patients with PsA (89% women, 73% aged 48-64 years, 40% with biological therapies). In the last month, the reported level of fatigue, morning stiffness and sleep problems of patients with SpA and PsA was considerable. In a scale from 0 (no symptoms) to 10 (high level of symptoms) the means were greater than 8. Almost 80% of patients with SpA described low back pain within the last month and 82.5% of patients with PsA pain, stiffness and/or arthritis on the knees, ankles, feet and/or hands, and 51% dactylitis. Regarding to daily activities, practicing exercise and house cleaning were the most affected ones among patients with SpA and PsA. We found that 70%-74% of these patients were concerned about pain and almost 60%-66% about loss of mobility and autonomy. The impact of the disease on work was in general very high very high. The level of satisfaction with treatments was low in SpA, mean 5.5 (scale from 0 no satisfaction to 10 very satisfied), and moderate in PsA, mean 6.2. Across treatments, the level of satisfaction was higher with biological therapies compared with classical synthetic disease modifying antirheumatic drugs in both disease groups. Many patients (70.2% with SpA and 66% with PsA) are used to live with pain every day. Many of the survey participants (over 50%) hope that treatments will help them recover their quality of life and improve pain, stiffness and fatigue. Oral treatments are preferred over subcutaneous and intravenous drugs in SpA and PsA. Patients also consider that oral treatments have more positive influence on adherence to treatments. A total of 22% of surveyed patients with SpA and 14% with PsA said that their rheumatologists never asked them about the factors that limit their life, 14.3% and 6% that they never talked about the impact of the disease on quality of life, and 43.8% (SpA) and 31.2% (APs) that they do not stablish treatment objectives with the rheumatologist. Almost 30% of participants stated that they would like to have more time to express and discuss doubts and concerns with their rheumatologist, and around 25% would like to have more follow-up visits. Table 1 describes the most used.Table 1.Sources and formats of information about the disease.SpAPsASource of informationSocial networks184 (33.9%)68 (23.4%)Patients associations158 (29.1%)77 (26.5%)Scientific societies70 (12.9%)36 (12.4%)Websites created by rheumatologists165 (30.4%)82 (28.2%)Physician197 (36.3%)117 (40.2%)Nurse33 (6.1%)10 (3.4%)Other/s11 (2.0%)7 (6.9%)FormatGraphic or visual illustrations184 (33.9%)78 (26.8%)Podcasts47 (8.6%)12 (4.1%)Video175 (32.2%)72 (24.7%)Written information (brochures, magazines, newspapers)200 (37.8%)100 (34.4%)News148 (27.2%)72 (24.7%)Chatbots8 (1.5%)2 (0.7%)Other/s10 (1.8%)6 (0.7%)ConclusionCurrent impact of SpA and PsA on daily life is still very high. There are areas for improvement in the doctor-patient relationship and on disease treatments.Disclosure of InterestsNone declared