Francoise Alliot Launois’s research while affiliated with La Ligue contre le cancer and other places

Background Gout appears to be one of the most common form of inflammatory arthritis, but few informations are available in routine practice about current management and satisfaction of French patients. Objectives Describe the experience of gouty patients through a real-life survey, including their disease experience and management. Methods The survey, initiated by the Association de Patients AFLAR (Association Française de Lutte Anti Rhumatismale) was conducted under the aegis of a steering committee (expert rheumatologist, GP, pharmacist, patients and AFLAR representative). The design and content of the survey has been developed together with several patient representatives and experts. The questionnaire was tested in advance to ensure that patients understood it and that it was consistent with their expectations. The questionnaire, made of closed questions mainly with simple choice, non-blocking, is Google Form type, self-administered and anonymized. The recruitment process is focused on adult patients with gout who are either adhering or not adhering to the AFLAR. Their solicitation was initiated by this association (Questionnaire linked to the AFLAR newsletter and social networks (FB, Linkedin) before being relayed by patients between them. The survey took place from 04/01/2023 to 27/01/2023. Results The population of 211 respondents is 60% male, 83% aged 60 and over, composed of retirees at 69%, and followed by a General Practitioner at over 73% or a GP/rheumatologist duo at 18%.The gouty disease is advanced and active with a diagnosis made for 5 years or 1 to 5 years for 75% of patients, with 2 or more attacks in the last 12 months for 45.7% of patients and at least 2 affected joints for 57% of patients. The most challenging symptoms are severe joint pain eight times out of 10, walking disability more than seven times out of 10, and decreased quality of life four times out of 10. Patients who receive treatment report feeling better or significantly better three out of four times and consider having a solid understanding of what to do in the event of a crisis, including taking medication prescribed beforehand or during an earlier crisis. Treatment during the last gout attack was based on colchicine (alone or combined with tiemonium and opium powder) or NSAIDs respectively in 68% and 24% of cases. In 64% of cases, additional analgesics are used, with one in two cases opting for a level 1 analgesic and three out of four cases opting for a prescription. More than 9 times out of 10 patients are satisfied with their treatment, with their satisfaction being highest for the 3 most troublesome symptoms in the same order. Information on the use of the drug in combination and on the potential effects of the drug are given respectively 6 times out of 10 and 1 time out of 2 mainly by the GP to 86% and 81%. During the last crisis, people preferred to follow proper diet and drinking plenty of water over resting and applying cold, with 38% and 33% respectively compared to 8% and 21%. Conclusion French Gouty patients know their disease well, are satisfied with the treatment, follow the advice relatively well and could benefit more from information by health care professionals. REFERENCES NIL Acknowledgements NIL Disclosure of Interests Didier Poivret: None declared, Gilles Le Pape: None declared, Jean Michel Mrozovski: None declared, Francoise Alliot Launois: None declared, Marie Hélène Brun: None declared, Franck Henri Mayoli.

Background Visual decision aids, used before or during consultations or available on the Internet, can improve shared decision-making and medication adherence in rheumatoid arthritis (ref). Among these, the relevance of ultrasound has not been explored. Objectives To explore the potential benefit of ultrasound (US) and other visual tools on patients’ treatment decisions and on medication adherence. Methods Qualitative study in 4 university rheumatology departments. Patients with active RA (i.e with at least one clinical synovitis) who required a change of DMARDs (disease modifying anti-rheumatic drugs) had a US examination as part of their usual care, including B-mode and power Doppler mode imaging of 42 sites and symptomatic joints. While performing the US examination, the rheumatologist directly showed and explained the US images and the interest of US in RA according to a predefined verbatim. Two anthropologists conducted semi-structured interviews (lasting 1-1.5 hours), recorded, transcribed, and analyzed using the inductive method. Five domains were explored: patient’s history, barriers and facilitators for medication adherence, representations of disease and treatment, patients’ perceptions of US and other tools for visualizing the disease as well as the benefits and risks of DMARDs. The tools comprised 36 images and graphs, 33 of which were collected or adapted from the literature or from academic Websites. Health literacy and numeracy were assessed by the Health literacy questionnaire (HLQ-3) and the subjective numeracy scale (SNS-3). Results Twenty patients were included, 18/20 were women, aged 27-70, with 1-30 years disease duration and good literacy and numeracy (13.1/15 and 15.3/18 respectively). The analysis showed: 1) all patients had previously had US but the results had not been explained to them. All patients had difficulty visualizing RA. US images of inflammation in Doppler mode helped them to understand the way they felt, validated their pain and made patients more involved in their care. US confirmed the motivation for treatment of patients with good adherence. Of the 4 patients with adherence problems, US images were an additional motivation for treatment in only one case.2) Only 1/20 patient had previously experienced visual tools. The images of the disease enabled patients to express their experience and its impact, but those showing the evolution towards joint destruction were not well perceived. Patients often misunderstood or were disappointed by the graphs and charts showing the benefits of treatment, as they expected a higher response rate compared to the placebo effect. Placebo effect was considered equivalent to no treatment.Numerical information on adverse events was accepted only by some patients, with a preference for the use of “pie charts”. Interest in the visual tools depended mainly on the level of acceptance of the disease, previous experience with graphs and patients’ abstraction skills. Conclusion Ultrasound was little used by rheumatologists as a means of communicating with patients, although the latter reported that it improved the therapeutic alliance. The value of showing and explaining ultrasound images in cases of poor compliance has yet to be clarified. The visual decision aids available in the literature are unlikely to be used with all RA patients. Making them available directly and untargeted could prove harmful in some patients. These results could help in the development of tools adapted to patient profiles. REFERENCES [1] Stacey D et al Cochrane Data base Syst Rev 2017 Acknowledgements Patient education Section of the French Society of Rheumatology Disclosure of Interests Catherine Beauvais Nordic, Galapagos, Janssen, Lily, Chugai, Pfizer, Sandoz, Novartis, This study received an institutional grant from Viatris, Lilly, Fresinius Kaby, and BMS, Marie Mangez: None declared, Karine Louati: None declared, Isabelle Griffoul: None declared, isabelle Henry-Desailly: None declared, Didier Poivret: None declared, Nathalie Deparis: None declared, Jean-Marc Sobhy-Danial: None declared, Rose Marie Poilverd: None declared, Sonia Tropé: None declared, Francoise Alliot Launois: None declared, Laurence Bérard: None declared, Anne-Christine Rat: None declared, Christelle Sordet: None declared, Guillaume Montagu: None declared.

Background Osteoarthritis (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. Objectives The 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. Methods Participants 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. Results 3465 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. Conclusion OA 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. Acknowledgements Acknowledgements to expanscience, Labhra, UBSA, and Tilman laboratory for their institutional support Disclosure of Interests LAURENT 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

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: There is an increasing interest for mobile health applications (Apps) to enhance patients self-management in rheumatology. However few have been developed involving patients and health professionals. Objectives: 1.To develop an App to improve medication adherence, safety and self-assessment in patients with inflammatory arthritis (IA) treated by biologics and/or methotrexate (MTX). 2. To assess its acceptability and usability. Methods: 4 steps. Step1. In 2016, a qualitative ethnographic study and a quantitative study including 21 and 344 patients respectively explored 1.the impact of IA in daily life, treatment practices, relationship between adherence and safety 2. the patients’ use of health Apps in general, their needs in terms of content and potential use (refs). Step2. A multidisciplinary team including 7 rheumatologists, 3 patients association representatives and 4 members of a Digital company developed the first version of the App through face-to-face meetings and qualitative interviews of patients along the development process. The content was collectively reviewed to be understandable by the patients and general population. After the launching of the App (step3), the assessment (step4), consisted in a) a qualitative study including 7 patients with different profiles (current users or non-users, satisfied or not) and 3 rheumatologists, having or not counselled the App to their patients, and b) the number of loadings and current users. Results: Preliminary studies indicated numerous safety issues and needs on adherence and daily life counselling, leading the 5 mains functionalities of the App: a) a treatment reminder, b) a global well-being self-assessment c) a safety checklist before administration, d) help in daily life situations related to self-management and safety e.g. symptoms requiring to stop their treatment (infections, surgery) etc…e) periodic counselling messages. The presentation was a friendly companion called HIBOOT (OWL in English) that interacts with the user. The content was based on the French recommendations of the Club Rhumatismes Inflammation (www.cri-net.com) for biologics and MTX management, the drug leaflets and the public national health websites. In May 2017 : launching on the stores (GooglePlay and iTunes, with free uploading); May 2017- January 2018 : communication toward patients, rheumatologists and health professionals (flyers, postal letters, Facebook, Tweeter). Assessment showed 2 types of usability: a regular use by the patients who have adopted the HIBOOT companion and are in demand of more functionalities; a more punctual use on specific questions with the need of quick answers. The reminder system was particularly appreciated and the messages considered understandable and reliable. Patients suggested ways of improvement on the App navigation system and the check list. Rheumatologists appreciated the independent scientific content although having a low knowledge of the App. To date, the mean loading is ∼500/months with a regular use of ∼1500-1800 patients monthly. Conclusion: The free App HIBOOT for patients with IA was developed through a formal methodology using preliminary qualitative studies, inclusion of patients all along the process and has a scientific validated content. Its acceptability and usability is good and will be improved according to patient’s advices. Communication is still necessary to enhance rheumatologist’s adherence to promoting the App. Reference [1] Montagu, et al. ARD, 2017; 76,suppl 2 (3) Beauvais, et al. ARD, 2017; 76,suppl 2 Acknowledgement: French Society of Rheumatology. Promotor French Society of Rheumatology. Institutional funding by Biogen, Nordic Pharma, Roche, Janssen, Novartis Disclosure of Interests: Catherine Beauvais: None declared, Thao Pham Speakers bureau: Lilly, Novartis, Guillaume Montagu Employee of: Unknowns strategic and innovation consulting, Celine Vidal: None declared, Guillaume Dervin : None declared, Pauline Baudart: None declared, Sandra Desouches: None declared, Julian Le Calvez Employee of: Unknowns strategic and innovation consulting, Delphine Lafarge Consultant for: Honoraria from Novartis for this project, Francoise Alliot Launois: None declared, Laurence Carton Grant/research support from: AMGEN UCB MYLAN BIOGARAN BIOGEN PFIZER LILLY GRUNENTHAL TEVA NOVARTIS JANSSEN EXPANSCIENCE SANOFI THUASNE MSD GENEVRIER ABBVIE, Marie De Quatrebarbes Employee of: Unknowns strategic and innovation consulting, Sonia Tropé: None declared, Henri Jeantet Shareholder of: strategic and innovation consulting, Jeremie Sellam: None declared

Background Certain fragility fractures (for example of the hip and femur) in the elderly are considered major since they are associated with increased mortality and morbidity.¹ Objectives To describe the characteristics of adults aged ≥50 years in France experiencing fragility fractures according to the site of fracture. Methods A postal questionnaire was sent to 15,000 individuals aged ≥50 years in order to identify and characterise subjects with a history of fragility fracture. Subjects were asked whether they had experienced a fracture in the previous 3 years and, if so, how many. Fractures were classified according to site into major (shoulder, vertebrae, pelvis, hip or femur and ≥3 ribs) or minor (other sites).¹ Results Of the 13,914 subjects returning the questionnaire, 425 (3%) reported ≥1 fragility fracture. The fracture history rate in the previous year was 1.4% [95%CI: 1.2–1.6]; this rate was higher in women (2.0%) than in men (0.7%) and increased with age. 147 subjects reported major fractures and 287 subjects minor fractures. Most fractures (82.4%) resulted from falling over. The most frequent major fracture sites were the humerus (10.6% of all fractures), vertebra (8.1%) and hip (7.1%). The most frequent minor fracture sites were the forearm/wrist (24.7%) and ankle (17.7%). 25 subjects reported >1 fractures and were excluded from further analyses. Subjects with a history of major fractures were older (p<0.01) than those with minor fractures (72.6±11.3 vs. 67.1±10.6 years; p<0.01). Distribution of gender, body mass index and comorbidities did not differ between prior fracture types. Current obesity was, however, associated with a higher rate of previous fracture of the lower limb. Subjects with a history of major fractures reported a significantly greater loss in height since the age of 20 (p<0.01) than those with a history of minor fractures (-3.38±2.35 vs. -2.75±2.02 cm). Subjects who reported lifetime corticosteroid use for ≥3 months more frequently reported major fractures than minor fractures (odds ratio: 1.90 [1.13;3.18]), as did post-menopausal women (odds ratio: 4.64[1.06;20.43]) and women using oestrogen-based hormone replacement therapy (odds ratio: 1.86 [1.06;3.29]). Parental fracture history, a history of falls, excess alcohol consumption or active smoking, and use of drugs that may increase risk of falls (antidepressants, antiepileptic drugs) were not associated with the type of fracture. Conclusion Extrapolated to the total French population, >340,000 people aged ≥50 years would be expected to experience a fragility fracture each year. One third of these fractures are major. Characteristics found to be associated with the severity of the prior fracture were older age, corticosteroid use, post-menopausal status and use of oestrogens. Limitations of the study include retrospective data collection, risk of recall bias, lack of ascertainment of fracture history and failure to capture subjects in residential care or who had died since the fracture. References [1] Bliuc, et al. JAMA 2009; 301:513-21. Acknowledgement The study was jointly conducted and funded by AFLAR and UCB. Editorial support was provided by Foxymed, funded by UCB Disclosure of Interests Bernard Cortet Consultant for: Bernard Cortet has received consultancy honoraria of speaker’s fees from Amgen, Expanscience, Ferring, Lilly, Medtronic, MSD, Novartis, Roche diagnostics, Théramex and UCB, Pierre Chauvin: None declared, Jean-Marc Feron Consultant for: Jean-Marc Feron has received consultancy honoraria and conference fees from UCB, Amgen and Lilly, LAURENT GRANGE Consultant for: Laurent Grange has received honoraria from Amgen, Lilly and UCB and research support from Lilly, Amgen, UCB, Expanscience, Mylan, Roche diagnostics and TEVA, Alain Coulomb: None declared, Robert Launois: None declared, Francoise Alliot Launois: None declared, Rahma Sellami: None declared, Chantal Touboul: None declared, Benoit Vincent Employee of: Benoit Vincent is an employee of UCB Pharma, France, Jean-Michel Joubert Employee of: Jean-Michel Joubert is an employee of UCB Pharma, France, Karine Briot Consultant for: Karine Briot has received consultancy honoraria and conference fees from UCB, Amgen, Lilly and MSD

Background There are few data on obese patients with axial spondyloarthritis (axSpA). Objectives To explore the impact of body mass index (BMI) on personal, professional and social life of axSpA patients. Methods BetweenDecember 2017 and February 2018, French patients followed for axSpA by their rheumatologists or affiliated to the French patients association AFLAR, and self-reporting axSpA, participated in the European Map of Axial Spondyloarthritis (EMAS) cross-sectional patient survey¹. Sociodemographic data (including weight and height), axSpA characteristics and disease impact on personal (social interactions, frequency of social activities) and professional life (working hours, sick leave, and disability) were collected via an online questionnaire. Patients were classified in two groups according to their BMI (obese BMI≥30 kg/m², non-obese: BMI<30 kg/m²) and a comparison between the two groups was conducted using chi2 or Mann-Whitney tests. There was no imputation of missing data. Results Data of 638 patients, mainly women 77%, median age (years) 41.5±11.1 were collected in France in 2018. Median BMI was 26.1±5.5 and 22.1% patients were obese (n=141). Median age was significantly higher in obese patients (44.1±9.9 vs 40.8±11.3; p=0.001), but there was no difference regarding gender, level of education and socio-professional categories. The obese had a longer diagnosis delay for axSPA (median 8.2±8.4 vs 6.6±8.1 years; p=0.01). They were more to report psoriasis (33.8% vs 21.9%; p=0,005) and the following comorbidities: anxiety, depression fibromyalgia, high blood pressure, hypercholesterolemia, diabetes and renal failure. Disease activity was also higher in the obese population: median BASDAI 6.5±1.5 vs 5.8±1.8 (p<0.001) and BASDAI ≥ 4 in 92.9% vs 84.3% (p<0.01). The same proportion of patients (61.9%) has been treated by a biologic in the two groups. The impact of axSPA on personal life was more frequently reported by the obeses: 65.2% vs 48.0% (p<0.005) had reduced the frequency of sport activities because of axSpA and 42.5% vs 28.3% (p<0.005) their sexual intercourse. There were a lower number of obeses, who had a regular physical activity (58.9% vs 68.8%; p>0.05) with a shorter mean duration of sport practice. At the opposite, no difference was observed regarding the impact of axSpA on professional life, with a similar proportion of obese and non-obese patients reporting sick leave (32.1% vs 24.9%) or disability (31.9% vs 28%). The mean number of working hours for the active people was also similar (35.5 vs 34.2 hours) in the two groups. Conclusion In this survey, obesity affected 22.1% of axSpA patients and was associated to a higher disease activity and a greater impact on personal life of axSpA, but not on their professional life. Obesity and its consequences have to be considered in the management of axSpA as it is already the case for psoriatic arthritis. References [1] Gossec, et al. Diagnostic Delay and Associated Factors in Axial Spondyloarthritis across Europe. Results from the European Map of Axial Spondyloarthritis Survey. Arthritis Rheumatol. 2018 Sep;70Suppl 9:688 Acknowledgement Survey supported by Novartis Disclosure of Interests Pascal Claudepierre Consultant for: Honoraria from Novartis as steering committe of this survey, Laure Gossec Grant/research support from: AbbVie, BMS, Celgene, Janssen, Lilly, MSD, Novartis-Sandoz, Pfizer, Sanofi, and UCB, Consultant for: AbbVie, Biogen, BMS, Celgene, Janssen, Lilly, MSD, Nordic Pharma, Novartis-Sandoz, Pfizer, Roche, Sanofi, and UCB, Consultant for: L Gossec has received honoraria from Celgene as investigator for this study, LAURENT GRANGE Consultant for: Laurent Grange has received honoraria from Amgen, Lilly and UCB and research support from Lilly, Amgen, UCB, Expanscience, Mylan, Roche diagnostics and TEVA, Marco Garrido-Cumbrera Consultant for: Honoraria from Novartis as steering committe of this survey, Emilie Desfleurs Employee of: Employee of Novartis Pharma, Francoise Alliot Launois: None declared, René-Marc Flipo Consultant for: Honoraria from Novartis as steering committe of this survey

Background 20 years after biotherapies were introduced in rheumatic diseases treatment in France, biosimilars are a new medical and economic issue in terms of therapeutic opportunities, and innovative treatment spreading and development. Patients’ rights - quality of life, information on treatment and safety - as well as public health cost management, medical and other caregivers ‘practices are involved. Objectives AFLAR wants to play an active role in these fields, as about one million of patients with inflammatory rheumatic diseases, and next other diseases, are concerned. Methods AFLAR’s patient led board (1), medical and scientific experts and especially expert patients have been working together to: • state AFLAR’s position about biosimilars • define the most adapted association’s actions in the field of biosimilars • create the most proper tool to inform and empower patients to their rights, especially in the field of treatment efficacy and safety. Results A position paper leading to a press release dated Dec. 7th, 2018 prior to national rheumatology medical congress opening has been achieved. An informative tool to be used for shared medical decision when biosimilars are involved, is currently in progress. AFLAR’S position on biosimilars includes 2 statements and 6 advices addressed to patients, caregivers and other stakeholders: Statements • Biosimilars are a medical and healthcare cost reduction effective solution in rheumatic diseases treatment; • Biosimilars have scientifically proved their efficacy and safety in past and ongoing studies; drug safety monitoring is ensured by national and European drug safety agencies. Advices • Further continuous clinical post–marketing studies should be achieved, and their results easily available to patients. • Patient should be properly informed each time a biosimilar is proposed if has not been tested versus original biotherapy in his/her own specific disease • Biosimilar drug can be prescribed for cost reduction reason as initial biotherapy treatment, when not contraindicated • Blind random switch from originator to biosimilar and among biosimilar products should not be done, based on precautionary principle • Patient should be precisely informed of product with biosimilar name (not only international non–proprietary name), and batch number, as this allows mandatory pharmacovigilance by professionals and patients. As per law (2) and professional ethics, patient preference and right to informed consent must prevail. • Self–assessment surveys, and patient reported outcomes using studies, should be encouraged. These are facilitated by new information technologies practices and devices. Conclusion The information tool will be proposed in the form of an information letter to be remitted by professionals to patient when biosimilar prescription or initiation is planned. The process includes: • creation of document by expert patients • user testing of tool (assessment about understandability and usefulness), in hospital departments, patient groups and on–line • knowledge assessment and opinion gathering among patients about biosimilars. References [1] According to its current by-laws, AFLAR board consists of at least 2/3 of persons affected with/concerned by rheumatic diseases, and/or presidents of affiliated patient associations. [2] Articles L1111-2 and L2002-303 Code de Santé Publique Acknowledgement thank you to the patients and associations of French patients having given their opinion on this topic Disclosure of Interests Laurence Carton Grant/research support from: AMGEN UCB MYLAN BIOGARAN BIOGEN PFIZER LILLY GRUNENTHAL TEVA NOVARTIS JANSSEN EXPANSCIENCE SANOFI THUASNE MSD GENEVRIER ABBVIE, Claire Cardon Grant/research support from: AMGEN UCB MYLAN BIOGARAN BIOGEN PFIZER LILLY GRUNENTHAL TEVA NOVARTIS JANSSEN EXPANSCIENCE SANOFI THUASNE MSD GENEVRIER ABBVIE, Francoise Alliot Launois: None declared, Gerard Chales Grant/research support from: AMGEN UCB MYLAN BIOGARAN BIOGEN PFIZER LILLY GRUNENTHAL TEVA NOVARTIS JANSSEN EXPANSCIENCE SANOFI THUASNE MSD GENEVRIER ABBVIE, Brigitte Liesse Grant/research support from: AMGEN UCB MYLAN BIOGARAN BIOGEN PFIZER LILLY GRUNENTHAL TEVA NOVARTIS JANSSEN EXPANSCIENCE SANOFI THUASNE MSD GENEVRIER ABBVIE, LAURENT GRANGE Consultant for: Laurent Grange has received honoraria from Amgen, Lilly and UCB and research support from Lilly, Amgen, UCB, Expanscience, Mylan, Roche diagnostics and TEVA

Background Axial spondyloarthritis (axSpA) can result in functional limitation and work disability. However, there are little data in the era of biologics. Objectives The aim of this analysis was to evaluate the impact of axSpA on professional life. Methods Between December 2017 and February 2018, patients followed for axSpA by their rheumatologists or affiliated to the French patients association AFLAR, and self-reporting axSpA, participated in the European Map of Axial Spondyloarthritis (EMAS) cross-sectional patient survey1. Socio-demographics (age, gender, relationship status, educational level, job status), disease activity (BASDAI) and the impact of axSpA on professional life (job choice, working hours, sick leave, unemployment and relationship with colleagues) were collected. The participants who were employed and working at the time of the survey were regrouped as “employed” and the ones employed or on temporary sick leave or students at the time of the survey as “active”. No imputation of missing data was performed and the analyses were descriptive. Results In France, 638 persons (mean age 41.5 ± 11.1 years, 77% females, mean disease duration 6.9±8.2 years, mean BASDAI 5.9±1.7) participated to the survey. About half of them (51%) had a university degree. At the time of the survey, 54% were employed, 26% in temporary or permanent sick leave, 7% unemployed, 6% retired, 5% homemaker and 2% students. Overall, 176 (28%) received social compensation for handicap or disability due to their axSpA. Regarding the employed ones (n=331), 50% were unskilled workers, 15% had an intermediate profession and 23% a white-collar job. The majority (73%) reported working issues related to axSpA in the last 12 months, such as sick leave (60%), reducing or difficulties to fulfill working hours (62%) or missing working hours for health appointments (33%). Among patients on temporary sick leave (n=72), 92% reported that it was the consequence of their axSpA and the mean duration of their temporary sick leave in the last 12 months was 5.4±4.0 months. Considering active people (n=418), 39% declared that their relationships with their work colleagues were worse since their axSpA. AxSpA had also influenced 55% of them in their job choice and drove 44% to adapt their workplace and 34% to move to another job. Finally, 62% expressed their fear to lose their job because of axSpA. Conclusion In this survey of 638 young axSpA patients, 66% of participants were active; the impact of the disease on professional life was described as important and often had consequences including permanent sick leave or unemployment. These aspects of axSpA should be better assessed. Reference [1] Gossec L, et al. Diagnostic Delay and Associated Factors in Axial Spondyloarthritis across Europe. Results from the European Map of Axial Spondyloarthritis Survey. Arthritis Rheumatol. 2018 Sep;70 Suppl 9:688 Acknowledgement Survey supported by Novartis Disclosure of Interests LAURENT GRANGE Consultant for: Laurent Grange has received honoraria from Amgen, Lilly and UCB and research support from Lilly, Amgen, UCB, Expanscience, Mylan, Roche diagnostics and TEVA, Pascal Claudepierre Consultant for: Honoraria from Novartis as steering committe of this survey, René-Marc Flipo Consultant for: Honoraria from Novartis as steering committe of this survey, Marco Garrido-Cumbrera Consultant for: Honoraria from Novartis as steering committe of this survey, Emilie Desfleurs Employee of: Employee of Novartis Pharma, Francoise Alliot Launois: None declared, Laure Gossec Grant/research support from: AbbVie, BMS, Celgene, Janssen, Lilly, MSD, Novartis-Sandoz, Pfizer, Sanofi, and UCB, Consultant for: AbbVie, Biogen, BMS, Celgene, Janssen, Lilly, MSD, Nordic Pharma, Novartis-Sandoz, Pfizer, Roche, Sanofi, and UCB, Consultant for: L Gossec has received honoraria from Celgene as investigator for this study