Jun 12, 2015 - its functions via the membership area in our website. ... The patients are instructed to create a plan for each area of improvement, such.
Scientific Abstracts The result was “Hälsoportalen”, (the Health Portal) a service that was rolled out in September 2014. Its purpose: to enable and motivate people with rheumatic diseases to make a lasting change of habits towards a healthier lifestyle. Methods: User participation played a vital part in the development of the new interface to the database hosted by Health Solutions. Nurses and patients access its functions via the membership area in our website. The efforts were focused on creating a user friendly and self-explanatory interface for entering values, sending text messages, blogging, setting up patient goals and checking user statistics. The patients are instructed to create a plan for each area of improvement, such as “increasing my level of physical activity”, “decrease my stress levels”, “loose X amount of body weight” et cetera. They are then encouraged by their coach to regularly register their activities towards reaching the goals set in the plan. The entered data are presented both in calendar form and as graphs in a diagram so the patients can easily follow their progress. The patients can also register their general state of fatigue, stiffness and pain. The coaching nurse has access to the same data and can discuss them in the scheduled phone calls throughout the 6 month long coaching program. Access to the program is limited to people with one of the following diagnoses: ankylosing spondylitis, rheumatoid arthritis and psoriatic arthritis. Results: The results so far have been overwhelmingly positive, with a very high sign up rate from our website and excellent user reviews. Currently we have 115 active users in individual coaching programs. We are in the process of conducting a more thorough user evaluation as our first patients are starting to wrap up their individual programs but based on previous results from similar programs we have high hopes of a high retention rate when it comes to keeping up a healthier lifestyle. Conclusions: The Swedish Rheumatism Association believes in the importance of empowering the patients. By offering tools for self-help combined with personal advice from a professional health care worker we can support a general movement towards a healthier lifestyle. Disclosure of Interest: None declared DOI: 10.1136/annrheumdis-2015-eular.4410
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HOW TO LIVE A BETTER LIFE WITH OSTEOARTHRITIS – A SOCIALLY IMBALANCED DISEASE
H. Thorseng. The Danish Rheumatism Association, Gentofte, Denmark Background: People with little or no education more often develop osteoarthritis (OA) and are less able to cope with their disease. Physically hard work and an often unhealthy lifestyle are predisposing factors. OA often results in a life in pain, disability, loss of quality of life and dropping out of the labour market. For the community it also has high economic impact in terms of long-term sick leaves, employment and support allowances, hospitalisations and demand for health care in general. Therefore The Danish Rheumatism Association together with Hvidovre Municipality initiated a project, which received funding from the funds of Danish Health and Medicines Authority for the prevention of social inequality in the healthcare systems. The project was carried out from December 2012 to November 2014. Objectives: The aim of the project was to investigate whether an evidence-based education and training program for people with knee and/or hip OA (GLA:D) is effective and implementable on a municipal level. Methods: 61 potential participants were enrolled into the education and training program GLA:D, 2 were excluded and 6 dropped out, leaving 53 to complete the program. The program consisted of 3 hours of patient education followed by supervised training twice a week for 6 weeks and a potential of dietary advice. All participants experienced pain from knees and/or hips, the age ranged from 37 to 85 years, they did not have any or little education and 52.7% were obese (BMI≥30). The participants were divided into 5 groups with a maximum of 12 participants in each group. Participants in group 1 to 3 were primarily pensioned while the participants in group 4 and 5 had association to the labour market (about half of them were on sick leave). Various forms of recruitment strategies were tested. The project was evaluated at three levels by University of Southern Denmark: 1) Quantitative impact measurement at the individual level by questionnaires and physical tests at baseline and again after 3 and 12 months. 2) Qualitative studies on how the participants experienced the program. 3) A process evaluation of the implementation of the project. Results: The participants experienced a reduction in pain and an improved physical function and quality of life. All participants experienced clinically relevant improvements, in particular the participants with association to the labour market. Group 4 and 5 reduced pain by 47% compared to 15% for group 1-3. The participants were motivated by the team spirit to join the training. At the same time competition encouraged them to exercises at home too. The process evaluation showed that the project was carried out based on a well-designed program. There was almost no need for changes in the program during the project. The greatest challenge was recruiting participants with association to the labour market. Conclusions: The project showed that GLA:D is effective, the participants were satisfied with the program and it is possible to implement in the municipality. The project therefore has a potential to improve the social inequality among people with OA in the health system. Disclosure of Interest: None declared DOI: 10.1136/annrheumdis-2015-eular.6027
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CAPABILITIES OF EUROPEAN LUPUS GROUPS: MEMBERS OF LUPUS EUROPE
K. Lerstrom 1 , B. Rubio 2 . 1 Chair; 2 Vice-Chair, Lupus Europe, Romford, United Kingdom Background: Lupus patient organizations have a significant role to play in healthcare. They are becoming increasingly important stakeholders in political and medical healthcare decision-making processes. Effective national patient organizations provide advice, education, and support to people living with lupus, their families and healthcare providers. LUPUS EUROPE is an umbrella organization of national lupus groups in Europe. At the onset of a new strategic period it was necessary to assess member groups’ capabilities before initiating development initiatives. Objectives: To identify the different structures and capabilities among European lupus groups. Methods: An online survey was distributed to validated contacts within the 22 member countries of LUPUS EUROPE (24 groups). The survey was divided into four sections (i) group aims, structure and funding (ii) resources and network (iii) the situation for people living with lupus in the country (iv) the lupus group needs and wishes in capability building nationally and on European level. Questions offered single answer, multiple response or commentary. Results: 14 groups (58%) responded from Belgium (2), Cyprus, Denmark, Finland, Greece, Italy, Iceland, Netherlands, Norway, Spain, UK, Sweden and Switzerland. Key results included: • 13/14 groups have an elected board of volunteers, 11/14 are run by volunteers • Six groups reported having national offices/secretariat function and six groups do not have an office • 10 of the responding groups only represented people living with lupus • 9 of the 14 groups are affiliated with the arthritis and/or rheumatism associations in the country • 12/14 groups cited membership subscriptions as the main source of funding • 5/14 groups have an established medical advisory board mainly involved with educational activities on lupus • Lack of lupus awareness amongst doctors and time to diagnosis were cited as major challenges for people with lupus in the country • 7 of the groups reported SLEDAI used nationally as a measurement index for clinical disease activity assessment • 8/12 groups identified need for capacity building in political lobby activities. More than 2/3rds of the groups expect LUPUS EUROPE to support member groups in their advocacy work and provide scene and opportunity to have more people educated and engaged in improving lupus patient interests in research and political work. Conclusions: There is a diverse range of capabilities and needs amongst national European lupus groups; some are very well established with significant capabilities, while others need capacity building in priority areas. Acknowledgements: Thank you to member groups, big and small, for all their help and support in the survey, taking the considerable time to fill in the responses and showing interest in the perspectives these findings can give. Disclosure of Interest: None declared DOI: 10.1136/annrheumdis-2015-eular.5351
OP0243-PARE
INVOLVEMENT OF CHILDREN AND YOUNG PEOPLE WITH LONG-TERM CONDITIONS IN THE DEVELOPMENT OF MOBILE APP TECHNOLOGY TO PROMOTE DISEASE SELF-MANAGEMENT
S.R. Stones 1,2 , V. Swallow 3 , R. Majeed-Aris 3 , A. Hall 3 on behalf of MobAPP Steering Group. 1 Arthritis Research UK Paediatric Rheumatology CSG, NIHR CRN: Children, Liverpool; 2 Faculty of Life Sciences; 3 Faculty of Medical and Human Sciences, The University of Manchester, Manchester, United Kingdom Background: The use of mobile devices is commonplace among young people.1 There is scope to develop this technology to support the needs of those with long-term health conditions (LTCs). Young people need support to become independent and be able to self-manage their condition. The mobile app would be a valuable tool in this process. However, there is little reliable research on the development or evaluation of this technology that actively involves young people as equal partners. Objectives: To establish a Manchester-based research team, consisting of young people with LTCs, parents, researchers, technologists and healthcare professionals (HCPs) as equal partners. The team will develop a plan of work that focuses on the use of mobile technologies for children and young people with LTCs2 , using the design and methods of our previous National Institute for Health Research, Research for Patient Benefit funded project.3 Methods: A group involving a patient with juvenile idiopathic arthritis (JIA), a parent, HCPs and researchers have established a Manchester-based research and development programme on mobile technologies for young people with LTCs. We have fostered strong partnerships with other national groups to help us agree on research priorities in this important area, and a plan of work to help us achieve these. Qualitative research was carried out in the form of an electronic survey, completed by a small population of 14 young people with JIA. Results: 86% of young people living with JIA felt there was a need for the mobile
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app, with 14% unsure about the benefit. Children and young people felt that they would use the app most at home or at the hospital. There was an observable lack of interest to use the app whilst at school, with friends or when shopping. Young people suggested that the app should be a tool to improve skills in disease self-management, as well as providing a safe and secure environment for social interaction and mutualistic data collection with HCPs. Conclusions: The development of mobile app technology for supporting disease self-management is important in an environment driven by technology and innovation. However, such tools must be developed, for and with, children, young people and their families, in order to be effective and promote long-term retention of such software. Following a systematic review of the literature regarding mobile apps in health, the project will continue to work with young people, parents and HCPs to produce a detailed software specification for a prototype application to test with young people. References: [1] Ofcom. (2014). The communications market. Available from http://stakeholders.ofcom.org.uk/binaries/research/cmr/cmr14/2014_UK_CMR.pdf. [Accessed August 2014]. [2] Dennison L, Morrison L, Conway G, Yardley L. (2013). Opportunities and Challenges for Smartphone Apps in Supporting Health Behaviour Change: Qualitative Study. J Med InternetRes. 15(4); [3] Swallow V, Carolan I, Hall A et al. (2014). A novel Interactive Health Communication Application (IHCA) for parents of children with long term conditions: Development, implementation,feasibility assessment. Informatics for Health & Social Care. Available from: http://www.ncbi.nlm.nih.gov/pubmed/25119067. [Accessed 19 October 2014]. Acknowledgements: MobAPP Steering Group, The University of Manchester Disclosure of Interest: None declared DOI: 10.1136/annrheumdis-2015-eular.1450
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DETERMINING THE BARRIERS FOR MEDICINE APPLICATION IN PATIENTS WITH RA IN MACEDONIA
D. Chichikj 1 , I. Hadji Mitova 1 , N. Bogdanovska 1 , V. Ognenovski 2 . 1 “NORA” Non-governmental Organization for Rheumatism&Arthritis, Skopje, Macedonia, The Former Yugoslav Republic Of; 2 Rheumatology, University of Michigan, Ann Arbor, United States Background: Macedonia has a social healthcare lagging behind all European countries (1). Patients with RA have average DAS28 of ∼5.2, one of the highest in Europe (2,3). The government funding is limited, only ∼$730K/y is allotted for medicines for patients with RMDs. There is a centralized access; no rheumatologists outside the capital. The average dose of MTX is
