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Background:Accessing jobs and being able to stay in a paid work position are a personal issue for people with rheumatic diseases, as well as for society. AFLAR, French league against rheumatism, has been acting towards patients and employers since 2014 in this field.Objectives:After a preparatory work with a panel of all types of professionals and institutions working on the subject, key messages on means to improve the professional situation of people with rheumatic diseases have been published. These messages were used as a basis for an awareness training designed for human resources training and employers’ managers, and in a guidance booklet designed for patients and published in 2016: «At work, even if affected by chronic rheumatic diseases ». This booklet, rather than gathering administrative and social resources in favour of patients, was based on patients’ and experts’ expression, written with them and proposed gradual guidance along their path from their professional choices to the disabled worker certification when needed.Two new actions have been seen as necessary in 2019 in order to go on with our actions: updating our booklet after 2 new laws had been issued in the field of labour law, and additions seemed necessary because of new work methods are developing (distant work from home, independent work); and the need of a new widely spreadable tool to accompany patients from the diagnosis stage, especially on the diagnosis disclosure to the work group issue.The specific characteristics of rheumatic diseases: diversity, growing invisibility of diseases’ effects and aftereffects to new treatments such as biologics and early rehabilitation, variation in time and personal impact, make them hard to understand by employers and even untrained social workers. This is what we noted from our experience in patient education workshops. Patients have a tendency to hide their pathology, and thus cannot benefit from social advantages as disabled workers, with motivation based on keeping personal image and an idea of normality, and fear of negative reactions from the work group, such as depreciation, pity, idea of negative impact on team’s productivity).Patients have to build a real strategy, taking into account these criteria and their personal choices, while preparing their job’s adaptation or social requests when needed. AFLAR chose to create a new patient information tool: free short widely spreadable videos, available on line. These will also invite patients to get in touch with expert patients on the specialized hotline, participate to chats of patient education workshops.Methods:Videos will show witness patients and experts, who will be asked about their experience and advice based on four questions:- Should we speak about our disease (and when, how?), or not speak about our disease at work?- What means « disablement », « being disabled » for you as a person affected by a rheumatic disease?- What have you been able to do to get a paid position, or keep your job, that you could quote as an advice for other people in the same situation?- If you had been given, or were given now a magic wand to make it easier to get or keep a job, or get/keep the job you dreamed of, what would you change?At the end, videos will deliver further advice, tools and resources taken from the booklet, such as a model of decisional scale, or reference institutional website addresses.Results:AFLAR wishes to contribute actively to rheumatic patients’, and especially young people’s information on the topic thanks to these more innovative and interactive tools.Conclusion:Furthermore, wishes, solutions and ideas of witness patients and users will be gathered for advocacy towards employers, institutions and decision makers.Disclosure of Interests:None declared

Background: Patient education is an important part of the management of rheumatic and other diseases. Since patients do not have the same needs, it is crucial to assess needs of a targeted group to be able to tailor educational interventions. Objectives: To assess educational needs of a large cohort of patients with different rheumatic and musculoskeletal diseases attending a health facility in Austria. Methods: We conducted an online survey with patients attending the Gastein Healing Galleries in Bad Gastein, Austria. Approximately 12,000 patients with a variety of diseases are treated in the centre every year. Of those, 6,465 patients were invited by email to fill out an anonymous online survey. Socio-demographics and health outcomes were collected from all respondents. In addition, the Educational Needs Assessment Tool (Austrian version -OENAT) was administered to a subset of respondents. The OENAT (39 items) assesses 7 domains of educational needs: Managing Pain, Movement, Managing Feelings, Arthritis/Disease process, Treatments, Self Help Measures, Support Systems. Results: In total 2017 (31%) patients responded of which 516 had data on educational needs: AS (63%), RA (14%), and FM (24%). Their mean (SD) age was 56 (11), and 54% were male. Level of education was: Elementary School (32%), Junior High School (22%), High School (21%), College (12%), and University (14%). Table 1 presents differences in educational needs across disease groups. Across the groups, there were significant differences in following OENAT domains: Managing Pain, Feelings, Treatments, and Support Systems. There were no differences in the level of educational needs in Movements, Disease Process, and Self-Help Measures. Patients with FM had significantly lower needs for managing and higher needs for feeling education, compared to those with AS and RA (p<.05). The RA group had significantly higher needs than the AS (p<.05) and FM (p<.05) groups for treatments education -the AS group had significantly higher needs than the FM group (p<.05) in the same domain. AS patients had significantly higher needs for support system education than FM (p<.05) and RA patients (p<.05).

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BackgroundOsteoarthritis (OA) is the most common form of arthritis, affecting more than 500 million people globally. OA is characterized by chronic mechanical pain and stiffness in the joints, limiting patient physical activities, leading to sedentarism, and disability. The results of the French web-based survey “Stop OA” (N=4227 participants) conducted in 2013 were presented at EULAR 2014. They evidenced the heavy burden of OA in France.ObjectivesThe survey was repeated in France/Belgium between 2019 and 2021 (N=3465). This study aimed at assessing the impact of OA on patient quality of life and looking at a potential evolution between the two surveys.MethodsParticipants were invited to complete the survey questionnaire online via the website www.stop-arthrose.org. The questions focused on demographic and socio-economic aspects, history of the disease, physical activities, beliefs about OA, its impact on daily life, assessment of health status and the consequences, as well as the needs and expectations of the participants.Results3465 questionnaires (France N = 2822, Belgium N = 643) were thus collected between September 2019 and January 2021. The average filling time of the survey was 40 minutes. In the 2021 survey, 80.8% of participants (mean age 60 years, 80.3% women) declared that OA had a negative impact on their morale and 64.1% that they had a deteriorated self-image due to the disease. 25% of participants thought that difficulties in their couple were caused by OA and 33% reported problems in sexual life. 24.8% found it hard to cope with the discouragement generated by the disease. Even if psychological repercussions were observed in 21.2%, less than 5% consulted a psychologist. The impact on leisure (78.1%) and family life (61.9%) was also significant, as well as on social activities (58.0%) and professional life (43.7%). The disease also hindered walking (67.4%) and prevented daily actions (32.0%). Some help was necessary, mainly for gardening or tinkering (28.7%), picking up or opening objects (22.9%) as well as shopping and household chores (17.7%). 50% reported difficulty falling asleep and 67.6% were being woken up at night during their sleep because of pain caused by OA. Fatigue was difficult to live with for 47.9% of the participants. Compared to the results of the 2013 survey, there was no significant improvement evidenced in any of the areas studied.ConclusionOA represents a real burden that affects the mental health of patients, their relationships and the quality of their sleep. There has been no improvement of OA impact in patient’ quality of life between the two surveys (i.e., 8 years). This reflects the lack of resources for research to find new treatments and implement evidence-based therapeutic strategies in the current medical practice. A better understanding of these repercussions will allow effective strategies to be adopted in order to deal with these issues.References[1]L. Grange, F. Rannou, F. Berembaum, P. Richette, F. Beroud, A. Chaussier-Delboy, X. Chevalier, C. Dreux, P.A. Joseph, C. Roques, A. Sautet, F. Srour, J. Giraud, D.R. Bertholon, F. Nock, H. Servy, First national osteoarthritis patients survey in France: patients insights first, 2014 PARE00022.AcknowledgementsAcknowledgements to expanscience, Labhra, UBSA, and Tilman laboratory for their institutional supportDisclosure of InterestsLAURENT GRANGE Speakers bureau: Expanscience, IBSA, Consultant of: Lohmann & Rauscher, Grunenthal, MSD, Grant/research support from: Thuasne, Sublimed, Remedee, Celine Mathy: None declared, Francoise Alliot Launois: None declared, Gerard Chales: None declared, Laurence Seidel: None declared, Adelin Albert: None declared, Rik Lories Speakers bureau: Abbvie, Boehringer-Ingelheim, Celgene, Eli-Lilly, Galapagos, Janssen, Kabi-Fresenius, MSD, Novartis, Pfizer, Sandoz, Biosplice (Samumed) and UCB., Consultant of: Abbvie, Amgen (formerly Celgeneà, Eli-Lilly, Galapagos, Janssen, Kabi-Fresenius, MSD, Novartis, Pfizer, Sandoz, Biosplice (Samumed) and UCB., Yves Henrotin Consultant of: Tilman, Nestlé, Wobenzym, Genequine, Expanscience, Lahra, Biose