J.- N. Dachicourt’s scientific contributions

Background Democratization of biotherapy for chronic inflammatory rheumatic disease has created new challenges in terms of therapeutic education for patient. Our goal has been to create the first modern serious game for adult patients with chronic inflammatory rheumatic disease treated with biotherapy. Objectives Our specification is based on the minimum self-care safety skills, a patient with a biotherapy must have acquired (issued by the SFR- Therapeutic Education section)¹. Methods An expert board was formed, with 5 rheumatologists, 1 pharmacist and 2 patients. Each game scenario was tested by patients. It helps to promote the self-care safety skills in biotherapy by creating sequences increasingly complicated during the progress of the game. A “guardian” mode with password access, unlocks all the scenarios available in the game for use in a group of educational validated program. This free game will be available online on www.ludomedic.com. An update is planned after launching the application for the increment of new scenarios play. A statistics module is also set up to quantify many indicators, such as number of players, the most frequent errors. These Statistics can guide the objectives of a therapeutic educational program patient at the individual level and the game will provide national statistics on the strengths and weaknesses of the level of knowledge of “patient players” in biotherapy. Results We opted for a video game called Serious Game. The principle is that the patient player must evolve an avatar having chronic inflammatory rheumatic disease treated by biotherapy. Different events disrupt the daily management of its biotherapy (fever, infections, pregnancy, surgery, travel etc.). The player must take the right decisions and allowing it to gain or lose points on his influential level of quality of life, influenced in terms of its decisions and actions. 5 themes have been made (fever and infection management, parenting desire, surgical and dental care, information, prevention, and logistics and injection technique). Conclusions This is the first serious game dealing with the management of a biological therapy in adult patient treated by a biotherapy in France. A study of its impact on the level of knowledge of patients and the most common mistakes will be investigated after broadcast. It is the result of two years of a unique collaboration between two associations of patient and French rheumatologists to offer a unique and innovative patient education tool. • Gossec L & col. Safety of biologics: elaboration and validation of a questionnaire assessing patients' self-care safety skills: the BioSecure questionnaire. An initiative of the French Rheumatology Society Therapeutic Education section. Joint Bone Spine. 2013;80(5):471–623. Acknowledgement This serious game was created and produced in partnership with the ANDAR association and with the Institutional support of laboratories AbbVie Disclosure of Interest None declared

La prise en charge de la spondyloarthrite est difficile et a évolué en fonction des concepts et des nouveaux traitements. La SFR a émis récemment de nouvelles recommandations pour la prise en charge courante de cette pathologie. Il n’existe pas de texte simplifié récent reprenant ces recommandations à destination des patients. Réécrire les recommandations en langage compréhensible par la population générale pour la prise en charge en pratique de patients atteints de spondyloarthrite (incluant le rhumatisme psoriasique) ; réécriture s’appuyant sur le texte des recommandations de la Société française de rhumatologie publié en janvier 2014. Un groupe de travail formé de sept patients issus d’associations nationales de patients souffrant de spondyloarthrite (AFLAR et AFS) et de deux rhumatologues et un groupe de lecture de « patients » issus d’associations de patients (AFLAR, AFS et ACSAC centre et Normandie) ont été constitués. Le groupe de travail a réécrit « en langage patient » les recommandations de la SFR. Le texte a été revu via une enquête internet par le groupe de 204 lectures « patients », et gradé selon leur degré de compréhension, et d’acceptation du texte sur une échelle de 0 à 10, où 10 est l’accord maximal. Des recommandations sont proposées aux patients et au grand public pour mieux connaître la prise en charge de la spondyloarthrite. Après avoir rappelé les principes généraux et le cadre nosologique de la spondyloarthrite, il est proposé 28 recommandations. Le niveau de compréhension est en moyenne de 8,8 (± 0,4) et l’accord sur le fond des recommandations est en moyenne de 8,5 (± 0,3). Au total nous obtenons un taux de compréhension supérieur à 7/10 dans 88 % et un taux d’accord supérieur à 7/10 dans 81 % sur l’ensemble des 28 recommandations. Ces recommandations actualisées et livrées dans un langage compréhensible offrent aux patients et au grand public un aperçu global du guide de la prise en charge de la spondyloarthrite en pratique courante en France. Les recommandations ayant le niveau d’accord le plus faible portent sur la place des corticoïdes et des disease modifying antirheumatic drugs (DMARD) dans cette prise en charge. Un travail d’éducation thérapeutique important est à faire pour améliorer ce niveau d’accord. Ce projet est un témoin de l’intérêt qu’une société savante puisse travailler avec des associations de patients en France pour améliorer le niveau de connaissance des patients et donc leur prise en charge.

Background Osteoporosis is a real matter or public health affecting more than 1 woman out of 3 and 1 man out of 12 (1). Over 50 years old, at least 1 woman out of 3 and 1 man out of 8 will suffer from an osteoporotic-caused fracture (2). Osteoporosis is a heavy-consequence pathology as every thighbone-upper-end-fracture leads to an average 21 days of hospitalization, 21% of patients die within three months, with a twice higher mortality rate amongst men. Silent before fracture happens, this pathology is commonly under-treated and under-diagnosed. General public has to realize how serious it is and large scale screening tests must take place to improve care. Objectives In 2011, AFLAR performed the first information leaflet and prevention of osteoporosis. Bringing awareness and develop good habits of life is the goal of the “bone thief”. Following completion of this fisrt paper brochure, it was designed a mobile application available on apple store and android market. First mobile application in France targeted to general public and doctors. In partnership with institutional support of Yoplait, the purpose of this apps is to improve the image and the management of a silent disease: osteoporosis. Methods To conceive this new public information media tools on osteoporosis, a physical brainstorming meeting took place, as well as two phone conferences about redaction. Patients members of AFLAR were included, as well as AFLAR recognized experts. They all participated equally to the conception and the redaction. The goal was to determine the key messages to improve care of osteoporosis and therefore its screening and its treatment. Results Downloadable iOS and Android, this free application accepts several headings. The first concerns the disease (definition, treatment, reflexes acquire and drug care); one second section details the risk factors via a quiz developed by the Scientific Committee of GRIO, in partnership with the AFLAR. This section asked questions concerning the physical identity (gender, age, weight), family history in tobacco consumption as well as treatments that may influence the onset of osteoporosis. A third section, entitled “Bone thieves” enumerates a list of tips to reduce the risk of fracture, “physical activity to maintain muscle tone, choosing a diet rich in calcium and vitamin D, sample recipes, exhibition the sun”. Notifications could be set up for calcium consumption, weekly physical activity through a “recall” feature provided by the application. Conclusions This mobile apps “the bone thief” is one of the first electronic applications through proactive notifications, call forwarding and other information messages, making it a truely electronic coach. The application offers real interactivity, reading fracture risk encouraging the patient to consult his doctor. References Disclosure of Interest None declared

Background The management of spondyloarthritis is difficult and has evolved in response concepts and new treatments. the French Society of Rheumatology (SFR) has recently issued new recommendations for the routine management of this pathology. There are no recent simplified texts incorporating the recommendations for patients. Objectives Rewriting the recommendations in language understandable to the general population for the management practice of patients with spondyloarthritis (including psoriatic arthritis) rewriting based on the text of the recommendations of the SFR published in 2014. Methods A working group consisting of 7 patients from national associations of patients with spondyloarthritis (AFLAR and AFS), and two rheumatologists and a reading group of 177 patients from patient's associations (AFS, AFLAR, ACSAS Center & Normandy) were formed. The working group has rewritten “in patient language” the recommendations. The text was reviewed by the group play “patient” electronically on the Internet and graded according to their level of understanding and acceptance of the text on a scale of 0 to 10. Results After recalling the general principles and nosology of spondyloarthritis, it is proposed 29 recommendations (RC). The level of understanding is excellent for 27 of the 29 RC less on treatment goals (RC2) and DMARDs treatment (RC21). The level of agreement is also excellent for 23RC. 5RC related to treatments (instead of cortisone, DMARDS and Surgery: 19,20,21,22,28RC) and 1 (related to a problem of coordination in the management of patients) have a profile lesser agreement. Conclusions Creation for 1st Time in France in Rheumatology recommendations for patients with proofreading patient care from a chronic inflammatory disease. These updated recommendations and delivered in understandable language provide patients and the public an overview of the guide the management of spondyloarthritis in current practice in France. Efforts on coordination and patient education related to treatment are important to do.A document will be distributed by all patient groups and the SFR. References Acknowledgements Rita Diebold (AFS), Asma Froukhi (AF)S, Fabrice Laloyaux (AFS), Ghislaine Schmid (AFS), Jean-Christophe Gauvrit, (AFS), Jean-Paul Servoz, (AFS), Jacqueline Bleinhant (AFS), Elisabeth Chassaint (AFS), Maurice Faugère (AFS), lysianne Dardennnes (AFLAR), Sabine Zaoui (AFLAR, Laurence Carton (AFLAR), Jean Noel Dachicourt (AFLAR), AFS, ACSAC centre, ACSAC normandie and the internet users with spondyloarthritis. Disclosure of Interest None declared

Objectives: The economic burden of osteoarthritis [OA] has not recently been evaluated in France. This study aimed to provide a health economic update of the patient costs associated with hip or knee OA treated in the community and in medical, surgical and obstetric care [MSO] and post-acute care and rehabilitation [PAC] hospitals in France. Methods: We analyzed data from the Disease Analyzer® database of medical records collected by a representative sample of French general practitioners in 2009–2010 and from the French medical information system program for public and private hospitals in 2010. Results: In 2010, 90 946 patients were hospitalized in MSOs for hip OA [median age: 75 years] and 84 848 patients for knee OA [median age: 71 years], of whom 44% and 61%, respectively, were transferred to PACs. Up to 94.5% of patients underwent joint replacement. Hospitalization engendered annual costs of €9797 per patient with hip OA and €11 644 per patient with knee OA, that is, a total cost of €1.955 billion for patients hospitalized for hip or knee OA in 2010. A total of 18 976 community patients [mean age: 66 ± 12.7 years] with OA were followed up for 1 year in the Disease Analyzer® database. The annual costs per patient were €715 and €764 for hip and knee OA, respectively, including a cost to the healthcare system of €425 and €454, respectively, that is, an estimated €3.5 billion [€2 billion to the healthcare system] for 4.6 million patients. Conclusion: Patients with OA generate considerable healthcare costs in France.

Background The (French) National osteoarthritis Alliance was created in 2011 to otpimise osteoarthritis patient care. Objectives One of its first initiative was the launch of a national patient survey in December 2012 to assess the main impacts and consequences of osteoarthritis in daily life. In addition to gathering patient needs, the results are expected to be able to sensibilise health authorities, and the public, about osteoarthritis patient's realities. Whilst a true public health issue, osteoarthritis is nonetheless not a priority in prevention or support in national or local health decisions. Methods A self administered questionnaire was developed by experts of the National osteoarthritis Alliance. The questionnaire addressed previously unexplored issues. The survey consisted of 113 questions and was tested and validated by patients before being put on line at www.stop-arthrose.org. Results More than 70% of the 2,914 respondents were aged between 50 and 69 y old. Contrary to common perception, more than a third of them suffered with the first signs of osteoarthritis before the age of 40. Amongst the osteoarthritis worsening factors, overweight and obesity were present for 52,5% of the respondents, having a professional activity which impacts joints (49,7%) or previous joint trauma (31,8%). The more affected joints were (decreasingly ordered) the knees, the hands, the hips and the feet. Respondents describe a negative impact of osteoarthritis on many life aspects, notably mood (81,7%), leisure activities (77,2%), professional activity (70,8%), walking (66,5%), self image (63,5%) and family life (59,4%). The results are also compiled in a brochure “osteoarthritis: experiences and needs of affected people” which is available on the Internet site www.stop-arthrose.org Conclusions One of the first limits of this survey is its distribution, which was only available for proactive, information seeking internet users. Nonetheless, the results assist in better understanding patient experience, needs and profiles, This innovative survey is a first important step to better recognise osteoarthritis as experienced by patients. Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.4109

Background The osteoporosis heavy weighs in the public health expenses, directly (care bound to fractures) and indirectly (associated cost to the reduction of autonomy and handicap). In overcoming years, an upsurge of fractures number bound to osteoporosis will grow up in France. Indeed, the life expectancy increases and the abandonment of the hormonal treatments for menopause treatment amplifies the risk of osteoporosis and fractures. Objectives Besides, various factors contribute to a stagnation of the yearly number of Dual-energy X-ray absorptiometry (DXA) repaid in France. In 2012, to throw back the tracking of the osteoporosis and the prevention of fractures, the AFLAR (French league against rheumatism) decided to create a “Collective Osteoporosis Workgroup” regrouping various actors concerned by osteoporosis. Methods This collective group met in 2012 and 2013 to analyse the tendencies in term of impact of the osteoporosis and osteoporotic bones fractures, as well as to identify the brakes for the screening of this pathology. A strong work of synthesis of all present scientific literature world database, permitted the production of a succeeded production of a containing synthesis document and led to incentive measures that will be defended by the Collective to the french stakeholders. Results This collective group asks for the setting up of three measures. For the World Osteoporosis Day, AFLAR led some actions to make know the measures defended by this collective group: sensitization of deputies and stakeholders by a flash mob took place in front of French National Assembly, launching at the same time a press campaign. Conclusions In the next months, the “Collective Osteoporosis Workgroup” is going to continue its mobilization and advocacy work to defend the measures that it recommends and, more generally, to boost the efforts of prevention and tracking on osteoporosis. Campaigns of sensitization will be led towards Public and People suffering of osteoporosis risks, as well as towards the health decision-makers in order to lead to have these 3 main proposal measures applied. Regarding to the increase of the rate of hospitalizations for hip fracture, particularly for 85 years old people and more (+ 7,5% from 2008 to 2009), it is essential to increase the effort of preventing and tracking osteoporosis. Using this advocacy action will help AFLAR to reverse this tendency. Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.5929

Background The project to build a “Medication Workshop” kit has been designed by AFLAR (French Association Against Rheumatic diseases, recognized of public utility) in order to provide health professionals and patient associations a set of tools to deliver educational workshops to good use (in terms of optimal efficiency, safety and autonomy) of medications – prescribed or not – and frequently used in rheumatic diseases. A multidisciplinary board was created to identify key messages to be conveyed to patients for each therapeutic class, and learning tools ready to be used by animators. A group of expert patients, mostly long-time volunteers of the association at the patients'help line and hospital patient meetings, was formed and consulted on priority messages and teaching methods, as always done by AFLAR for such projects. Objectives The workshops were designed to last 1.30-2 hours. They are intended for all patients likely to use analgesics, nonsteroidal anti-inflammatory drugs or oral corticosteroids, whether newly or previously diagnosed. These group sessions can either be used in general health education, or as part of standardized patient education programs that meets the 2007 Recommendations the High Authority of Health in France and Law “No. 2009-879 of 21 July 2009” and its implementing decrees about patient education. Methods The animation methods used were: definition building by the group, group discussion, activity of recognition and sorting of drug boxes, Barrow cards, group summary and answers/individual additions, raised questions related participants about and response by the co-animating expert caregiver. The workshops have been tested with groups of patients in a U hospital rheumatology department and in a “patients association house” of a second hospital, and during 1st National Meeting for patients about Rheumatism, multi- associative Congress initiated by AFLAR, ANDAR and AFS patient associations. An evaluation questionnaire had been designed and used during these test sessions. Results The feedback from patients shows great satisfaction of audience, with a score of response to the expectations of 9/10; 18 of 19 patients felt that the proposed activities were useful, and 17 of 19 patients were ready to come back for another workshop. The “supply of knowledge” domain received the lowest score, 8.4 out of 10, additional questions have arisen in each test, asking to enrich content with physiological patterns, and general answers on about the diseases, medications, or diets. Workshops' test sessions were also filmed to produce video demonstration to medical teams or associations wishing to use the whole tool kit, which will be available free of charge on www.aflar.org. After each use of the kit, the organizers will be asked the to enrich the workshop with their own feedback. Conclusions The AFLAR Medication Workshops constitute an original initiative in terms of education for patient safety, still underdeveloped in France. They can be used by healthcare facilities as part of education for patient safety, by patient groups or associations, in usual practice or for example on the occasion of the yearly European Week for patient safety. Acknowledgements The project was funded by ANSM, French agency for drug safety. Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.5980

Background The impairment of hands and wrists found in certain rheumatic disorders may limit the gripping of oral hygiene instruments, thereby making brushing more difficult and possibly impacting oral health (caries, gingivitis, periodontitis, etc.). Objectives To assess the interest of the INAVA SYSTEM ergonomic toothbrush. Methods A national observational study proposed to 2705 people with gripping difficulties who are or used to be members of an association against rheumatism (Association Française de Lutte Anti-Rhumatismale, AFLAR). After giving their consent, 126 people (75% women) used the INAVA SYSTEM toothbrush for 7 days. Of the 126 people surveyed, 109 of them completed two questionnaires on satisfaction and ergonomic efficacy before/after using the tested system. Results Upon entry in the study, nearly 61% of the people brushed their teeth 1 to 2 times per day and 38% brushed their teeth 3 times per day. Gripping issues resulted in difficulties in accessing certain brushing areas in 68% of cases and limited the duration of brushing for 66% of them. These issues led 29% of patients to look for a solution that improves gripping, such as extending or thickening the toothbrush handle, opting for an electric toothbrush, or even using both hands simultaneously to brush one's teeth. After 7 days of use of the INAVA SYSTEM toothbrush, patients gave an average overall evaluation mark of 8/10. In about 75% of cases, long last tooth brushing has been achieved by the INAVA SYSTEM, especially in patients limited by their gripping difficulties (86%). Sixty-five percent (65%) of respondents also indicated that the system has increased the accessibility in the oral cavity. Conclusions The use of the INAVA system in people with gripping difficulties had a positive impact on oral hygiene in terms of brushing duration and accessibility to dental surfaces. These two parameters are essential for the control of dental plaque which causes caries and gum diseases. In addition, 79% of respondents are convinced by the INAVA SYSTEM toothbrush and want to extend the experiment. Disclosure of Interest L. Grange: None declared, J.N. Dachicourt: None declared, I. Constanty: Employee of: Pierre Fabre Santé, J.P. Gatignol Employee of: Pierre Fabre Santé DOI 10.1136/annrheumdis-2014-eular.1257