Jun 12, 2015 - A)children,teenagers and their families B)adults under the age of 50. This has allowed us to ... information such as forum's and e-learning while also hosting social events, ... arthritis: Results from a web-based survey. Arthritis ...
Scientific Abstracts exercise program on multiple dimensions of fatigue in women with FM, and to investigate predictors for the potential change in fatigue. Methods: A total of 130 women with FM (age 22-64 years) were included in this assessor-blinded randomized controlled multi-center trial examining the effects of person-centered progressive resistance exercise compared with an active control group. The intervention was performed twice a week for 15 weeks. Outcomes were five dimensions of fatigue measured with the Multidimensional fatigue inventory (MFI-20). Information about background was gathered collected and the women also completed several health-related questionnaires. Multivariable stepwise regression was used to analyze predictors of change in fatigue in the total population. Results: A higher improvement was found at the post-treatment examination for change in the resistance exercise group, as compared to change in the active control group for the MFI-20 subscales General fatigue (Resistance -1.3 SD 3.1, Controls -0.5 SD 2.6, p=0.031), Physical fatigue (Resistance -1.7, SD 4.3, Controls 0.0, SD 2.7, p=0.013) and Mental fatigue (Resistance -1.6 SD 3.4, Controls -0.1 SD 2.5, p=0.008). Sleep efficiency was found to be the strongest predictor for change in the MFI-20 subscales General Fatigue (rs = -0.21, p=0.049) and for change in Reduced Motivation (rs = -0.22, p=0.037). Participating in resistance exercise (beta =1.90, p=0.010) and working less hours per week (beta =0.84, p=0.005) was independent significant predictors for change in Physical Fatigue (R2 =0.14). Participating in resistance exercise was the strongest predictor for change in Mental Fatigue (p=0.008). Conclusions: Person-centered progressive resistance exercise improved multiple dimensions of fatigue in women with FM when compared to an active control group. Participating in resistance exercise, reporting poorer sleep efficiency and working less hours per week at baseline predicted improvement in multidimensional fatigue in women with FM. Disclosure of Interest: None declared DOI: 10.1136/annrheumdis-2015-eular.4790 FRIDAY, 12 JUNE 2015
Youth in action OP0287-PARE
INCORPORATING YOUTH INTO A NATIONAL ORGANISATION
L. Hickey. Arthritis Ireland, Dublin, Ireland Background: Arthritis is a disease that is commonly known to the general public as an older persons disease. However, the reality is that many young people live with this disease. In Ireland 165,000 people under the age of 55 live with arthritis and over a 1,000 children and teenagers. Naturally isolation is a common feeling amongst this group. This cohort have very complex but also very different needs and as such require programmes and services that address these issues. Over the past number of years Arthritis Ireland has incorporated youth across all aspects of the organisation. We’ve segmented our services for the first time introducing a youth services creating two different groups: A)children,teenagers and their families B)adults under the age of 50 This has allowed us to create a service that is not just appealing and attractive but also inclusive for people of all ages. Today we have a vibrant network of people including many young people motivated to changing the face of arthritis. Our organisation incorporates youth activities across all levels. Objectives: As an organisation we wanted to ensure that we represented the needs of all people with arthritis including younger people with arthritis. Methods: We carried out research across our entire youth network. After our needs analysis it was evident that the needs of young people are very different. Another important aspect of our analysis revealed that needs directly relating to this age group change several times as they approach different life stage for example: a child becoming a teenager or an adult starting a family. Thus it is important to cater for this and acknowledged that when this will happen is very individual especially for the 18-50 age group. Arthritis Ireland made small changes to begin with but our service has increased significantly over the past number of years. We segmented our services in into two age groups, within each category we have various programmes to cater for this wide range of needs. An example of this is that the needs of a child are very different to that of a teenager. How we communicate with various people within these groups is also different and requires a different strategic approach than that traditionally used. Our children, teenagers and parents group have a wide range of services some of which include: self- management programmes, a helpline, rheumatology clinic support for families, hydrotherapy, family days and a teenage programme. Our adults under the age of 50 programme includes online supports, services, and information such as forum’s and e-learning while also hosting social events, self-management and physical activity programmes. Conclusions: Today we have a full time person dedicated to managing our youth services on a national level and also a vibrant volunteer youth network. In addition to this, youth is at the heart of what we do and as an organisation is incorporated right across all departments. While we segmented some of our services dedicated to youth, young people
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are representing across all our programmes and services. Providing a dedicated youth service has allowed us to interact with a great number of people, thus having a greater impact on their quality of life Disclosure of Interest: None declared DOI: 10.1136/annrheumdis-2015-eular.5707
OP0288-PARE
THE TOP CONCERNS OF CHILDREN AND YOUNG PEOPLE LIVING WITH JIA
S.R. Stones 1,2 , C. Wright 2,3 on behalf of Paediatric Rheumatology CSG Consumers. 1 Faculty of Life Sciences, The University of Manchester, Manchester; 2 Arthritis Research UK Paediatric Rheumatology CSG, NIHR CRN: Children, Liverpool; 3 Arthritis Care Northern Ireland, Belfast, United Kingdom Background: Juvenile Idiopathic Arthritis (JIA) is a common form of chronic arthritis in children, diagnosed under the age of 16.1 It is a long-term condition (LTC) characterised by several clinical and humanistic features, and is recognised in contributing to a reduction in quality of life amongst children and young people (CYP).2 Previous research has identified parental concerns about JIA; however, it is important to identify the concerns of CYP in order to address unmet needs in healthcare provision and support. Objectives: To identify the top concerns of CYP with JIA. The results of the survey will inform future research to address any issues raised. There will also be a comparison to previous research conducted by Douglas et al. regarding the top concerns of parents of CYP with JIA. The project was lead by two patients with JIA who are now consumer representatives. Methods: The study sample included CYP with JIA (aged 8 to 24, based on World Health Organisation definitions). Qualitative research was carried out in the form of electronic and paper-based surveys distribted via charity group workshops and social media. The top concerns and the healthcare experience of CYP with JIA was identified. Insights analysis was ongoing at the time of submission. Results: In addition to responses from patients aged 8 to 24, insights were generated from younger and older patients, as well as parents. These will be reported as supplementary findings. Most CYP identified the survey via social media. Approximately three-times as many female patients responded, compared to males. The top concerns generated were grouped into overarching themes, including: long-term disease effects, a fear of being labelled as “different”, isolation from others, pain and fatigue, restriction from “normal” activities, medication and school/working life. There were also some key themes about the hospital experience of CYP, including: transition, continuity of care, the clinical environment, ineffective treatments, transparency, disease awareness and lack of support groups. There were also responses from England, Scotland, Northern Ireland and the United States of America, demonstrating some of the differences in care provision across different healthcare services. Conclusions: It is evident that CYP have meaningful experience of the day-to-day burden of living with JIA, providing an essential understanding of what patients identify as priorities. The results from the survey will help to suggest further research, with an aim of developing interventions to address these concerns. Following a full analysis of the survey, this research will continue to work with CYP, families and professionals to improve the experience of CYP living with JIA. References: [1] Weiss JE, Luca NJC, Boneparth A, Stinson J. (2014). Assessment and Management of Pain in Juvenile Idiopathic Arthritis. Pediatric Drugs. 16(6): 473-481. [2] Haverman L, Grootenhuis MA, van den Berg JM, van Veenendaal M, Dolman KM, Swart JF, Kuijpers TW, van Rossum MAJ. (2012). Predictors of healthrelated quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web-based survey. Arthritis Care & Research. 64(5): 694-703. Acknowledgements: JIA Facebook groups, Arthritis Care Northern Ireland, Scottish Network for Arthritis in Children, Children’s Chronic Arthritis Association, all other JIA charities in the UK and Ireland. Disclosure of Interest: None declared DOI: 10.1136/annrheumdis-2015-eular.1455 SATURDAY, 13 JUNE 2015
Comorbidities OP0289
COMORBIDITY WITH DEPRESSION AND ANXIETY IS ASSOCIATED WITH DISCONTINUATION OF TUMOUR NECROSIS FACTOR INHIBITOR (TNFI) THERAPY IN ANKYLOSING SPONDYLITIS (AS)
E. Lie 1,2 , U. Lindström 1 , L.E. Kristensen 3 , H. Forsblad-d’Elia 1 , J. Askling 4 , L.T. Jacobsson 1 on behalf of the ARTIS Study Group. 1 Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden; 2 Diakonhjemmet Hospital, Oslo, Norway; 3 The Parker Institute, Copenhagen, Denmark; 4 Karolinska Institutet, Stockholm, Sweden Background: Studies using validated questionnaires have shown a high prevalence of depression and/or anxiety in patients (pts) with AS, and such comorbidity has been found to be associated with AS outcome measures such as Bath
