PARE0025 “RA - DON’T GIVE UP” - LIFE WITH RHEUMATOID ARTHRITIS FROM PATIENTS’ PERSPECTIVE
Authors: T. Sobierajski, J. Grygielska, E. Godlewska
Journal: Annals of the Rheumatic Diseases (2020)

Background: Rheumatoid arthritis (RA) as chronic and progressing to disability disease decreases a quality of life of every person suffering from it. Knowledge about this influence from patient perspective is important to limit burden of RA and organize appropriate care for patients. Objectives: RA has input on every area of individual and social lives. Recognition of patients’ situation in daily life, professional life, participation in treatment, taking life decision gives possibilities to better understanding of diseases and starting activities to change lives with RA. Aim of research was to learn attitudes, knowledge and experiences of people living with RA. Methods: The study was initiated by KnowPR in partnership with Polish Rheuma Federation ‘REF’. Main researcher was Tomasz Sobierajski PhD., sociologist from Warsaw University. The first stage of the study was a workshop with patients with RA organized by REF. It was brainstorming to identify main problems, appropriate understand life with RA and discussion on questionnaire. After small pilot study on questionnaire, research was made by CAWI technique. Questionnaire had been linked on professional websites, facebook, Twitter, health forums. The data had been completed during one month - January 2019. Results of survey were presented in booklet with comments. Opinions introducing results were done from persons represented patronages of project: minister of patient rights, president of Polish Society for Rheumatology, national consultant in rheumatology, directors of National Institute of Geriatrics, Rheumatology and Rehabilitation. Publication was enriched by stories of people with RA living full lives. Publication was launched during press conference and disseminated in hard copies and on-line with free access. Results: In survey took part 619 respondents with RA - mostly women (90%). The biggest group of respondents (34%) was in age 46-60 years old. Duration of disease was different – from few months to more than 40 years. More than half of respondents are suffering from RA more than 10 years. Disease influences of every life area. Only 38% of respondents participate in decision about their treatment and took it together with rheumatologist. There are different opinions about way of taking medication. There are not differences among age groups and duration of disease in this. Majority of patients suffer from pain (73%), from limited abilities (68%) and from permanent fatigue (69%) in everyday lives. Rheumatologist has the biggest confidence among patients like a source of information about disease (73%). Other health professionals have lower confidence (35-40%). Majority of respondents (68%) note his knowledge about diseases like rather good and better. Respondents didn’t connected their decision of having a child with disease how it has been before (59%). Part of respondents had to change or resign of professional work (30%). Part of them resigned from social life and hobbies before disease. In opinion of 57% of respondents RA changed totally their lives (57%). Conclusion: Results of survey was used like a tool in lobbying for accessibility in newest treatment in RA. Further recognize of quality of life in RA is needed. Interviews of focus groups and individuals are planned. References: [1]T. Sobierajski. Codzienność z reumatoidalnym zapaleniem stawów. Warszawa 2019 Disclosure of Interests: None declared