PARE0006 LIVING WITH A RHEUMATIC DISEASE: A RESEARCH ABOUT QUALITY OF LIFE AND WORK CONDITIONS

Abstract

Background There are 5 million people who suffer from rheumatic diseases in Italy with an annual expenditure of the health system, estimated for the chronic forms, around 4 billion euros. During the World Arthritis Day 2018 the Association of Persons with Rheumatic and Rare Diseases - Apmar Onlus presented the results of the survey “Living with a rheumatic disease” with the aim of raising public awareness by disseminating data useful to understand the quality of lives of people living with one of the 150 rheumatic diseases. Objectives The research investigated: The quality of life of people with a rheumatic disease The work problems and conditions experimented by people suffering from a rheumatic disease. Methods The survey was both qualitative and quantitative. The qualitative phase was held in Milan and was preparatory to the development of the questionnaire distributed at national level. In this first phase two groups of five people were interviewed for two hours. The people interviewed in the focus groups were women and men, age 25-55 years (50% 25-40; 50% 41-55) with at least one rheumatic disease, currently workers/laborers at least part-time. In the quantitative phase, a questionnaire was administered throughout the national territory to a sample of 1,020 people, women and men, age 18-75 years with at least one rheumatic disease, currently workers/laborers at least part-time or who worked for a period following the diagnosis of rheumatic disease. The used methodology of on-line investigation was the Cawi (Computer Aided Web Interview). Results 89,1% of separated and/or divorced interviewed reported that the disease caused problems in the sexual relationship with the partner as to cause their divorce/separation; 61% of the sample had to reduce working activities significantly, in many cases abandoning the job completely; 26.3% of the sample stated that he prefers not to speak about his illness either with his work colleagues or with his boss and/or superiors. Conclusion Rheumatic diseases affect relationships and social life negatively. The research shows how the rheumatic disease can have a particularly critical effect in the relationship with the partner. The problems arising in the relationship of the couple are so meaningful, and cause of misunderstandings and psychological suffering to be considered among the main causes of divorce and separations. Rheumatic diseases heavily affect the working life. From the research emerges that people with rheumatic diseases that have managed to preserve their work despite the disease, are often reluctant to talk about their health conditions at work. The main reason is the fear of worsening and/or compromising their relations with colleagues and superiors with consequent negative effects on work tasks and the risk of losing their workplace. People suffering from rheumatic diseases in Italy declare that their condition of difficulty due to the pain, is often underestimated, this leads them to take a closing attitude for the fear of not being understood. The respondents also expressed the fear that in the highly competitive society we live in, there is no place for people to express their pain: they are afraid of being considered weak and in a certain way “to be put aside” and so they must therefore “show themselves strong”. Reference [1] A. Celano, President - APMAR Onlus; S. Mingolla, Journalist - APMAR Onlus, Matteo Santopietro - Managing Director - WeResearch – ricerche di marketing. Disclosure of Interests None declared