Highlights EULAR 2012

Health Professionals Sessions

Jenny de la Torre Aboki

RN MSc PGdipRheum PhD candidate

Alicante General and University Hospital

Alicante –SPAIN-

Wednesday 06th of June 2012: How to run an osteoarthritis clinic

in daily practice

Describing various organizational models for osteoarthritis clinics

An overview of best practices for OA care

– There is an increasing recognition that implementation of recommendation for a better diagnosis, assessment and management of OA is different than simple disseminating information.

– Educational programs often result in only small changes in professional behaviour

– This group is studying how best to implement the NICE OA recommendations and optimise the consultation for OA in UK primary care with patients, general practitioners, practice nurses and the broader multidisciplinary team.

SP0015; K. Dziedzic, UK

An overview of best practices for OA care

– The WISE model (“Whole system Informing Self-management Engagement”).

– The WISE approach envisages informed patients receiving support and guidance from those trained practitioners who are working within a healthcare system which is geared up to be responsive to patients’ needs.

– To evaluate this approach we have adopted the toolkit (http://www.normalizationprocess.org/) proposed by the Normalisation Process Theory .

SP0015; K. Dziedzic, UK

A nurse-led OA clinic in specialist care

- Her experience setting up a nurse led arthritis clinic in England in 2004. With the role of ensuring a patient centred approach to care, acting as an information resource, symptom control and referral to members of the team.

- Business proposal to health policy makers.

- Private appointments. No routinetely follow-up.

- Need for awareness campaign about what nurse could offer to OA patients.

SP0016: S. Oliver, UK

A stepped care approach towards hip and knee OA in primary care

• Multiples OA treatment guidelines but marginatelly implemented in Netherlands.

• Aworking group was created to promote the implementation of a multidisciplinary guideline for OA.

• BART: Beating osteoArthritis.

• Aim: being a multidisciplinary non surgical treatment guideline to improve communication and patient centred care.

SP0017:S. Bierma-Zeinstra. Netherlands

A stepped care approach towards hip and knee OA in primary care

3 stages:

1. The first step can be offered to all patients (education, life style advice, and acetaminophen).

2. The second step (exercise therapy, dietary therapy, and non-steroidal anti-inflammatory drugs or other pain medication)

3. and third step treatment options (multidisciplinary care, intra-articular injections, and transcutaneous electrical nerve stimulation) can be considered for people with

persisting complaints.

SP0017:S. Bierma-Zeinstra. Netherlands

EULAR recommendations on non-pharmacological management of hip and knee

OA• The aim of this project is to develop evidence and expert

opinion-based EULAR recommendations for non-pharmacological management of osteoarthritis of the hip and knee and propose a future research agenda.

• Method based on the EULAR SOP• A Steering Group consisting of 22 participants was

established in February 2011• Delphi process• 11 propositions

SP0018: L. Fernandes, Norway

EULAR recommendations on non-pharmacological management of hip and knee

OA• Systematic literature review proposition specific:

– In people with hip or knee OA, initial assessment should be done (Level of evidence 1B/Level of agreement 8.7).

– Individualised treatment (1B/8.7)– Package of care (individualised management plan) (1B/8.7)– Lifestyle changes (weight loss, exercise ) (1B/8.0)– Patient education (1B/8.4)– Delivery of exercise education (1A/8.9)– Exercise regimen (1A/8.5) – Principles of weight loss interventions (1A/9.1)– Use of aproppriate shoes and insoles (1B/8.7)– Assistive technology, walking aids and adaptations at home (3/8.9)– Vocational rehabilitation (3/8.9)

» Research agenda, educational agenda.

SP0018: L. Fernandes, Norway

Thursday 7th of June 2012: Joint clinical/HPR/PARE session

Patient involvement in research. Past, present and future

Fifteen years of experience with patients involvement in research. What has been

achieved?

• 37 different patients have been involved in contributions to the development and implementation of a research programme over the last 15 years.

• They have contributed on 147 different occasions including providing advice and support, helping to write grant applications, making contributions to protocol development, analysing results and interpreting results.

• Local example of a PhD project; international example has been mentioned

SP0081: JR. Kirwan, UK

Ten golden rules for researchers – how to capture the patient perspective in your

research project?

• “how to involve patients in research?”

• Based on a responsive evaluation of patient involvement in OMERACT conferences and a review of the 8 EULAR recommendations for the inclusion of patient representatives in scientific projects the author has identified ten considerations for including the patient perspective in research.

SP0082: M. De Wit, Netherlands

What does it mean to involve patients successfully in research? The health professionals perspective

– The European League Against Rheumatism (EULAR) recommends collaboration with patient representatives (PRs) in scientific projects to ensure that these are in line with patients’ needs and priorities

– To ensure active involvement, researchers should follow published recommendations, principles and indicators of successful PR involvement .

SP0083: I. Kjeken, Norway

What does it mean to involve patients successfully in research? The health professionals perspective

– Some central principles are:• time and climate for role negotiation, • an appropriate budget for covering the costs of PR involvement, • a mutual respect of the differing skills, • knowledge and experience of PRs and researchers,• appropriate training of PRs as well as of researchers, • that PRs are involved throughout the whole research process, • that their involvement is acknowledged in the research report(s),• and that the findings are made available to consumers in formats and

languages they can easily understand.

SP0083: I. Kjeken, Norway

Patient involvement in research on the international arena

– The past years have seen a growing involvement of patients in research, not as research subjects but as research partners.

– Building on the experience acquired when co-leading several international initiatives, the author did address some of the specific difficulties but also strengths inherent to patient participation in international projects.

SP0084: L. Gossec I, France

Thursday 7th of June 2012: HPR session

Promotion of physical activity in rheumatology targeting patients, providers

and the public

Motivational interviewing from the patient’s perspective to increase physical activity in arthritis

• Many people with arthritis are not physically active. • There are many reasons for reluctance.  • Changing behavior is no easy task. • Motivation from extrinsic as well as intrinsic factors can play a role in

behavior change. Self-regulation is the capacity to alter your own behavior. • Motivational interviewing (MI) is a patient centered, directed approach to

enhance intrinsic motivation to change by exploring and resolving the individual’s ambivalence to change.

• The Client Perception of Motivational Interviewing Encounter Instrument has been created to assess how patients with arthritis view this type of counseling style. Qualitative data from patient focus groups and preliminary psychometric data for this new instrument have been discussed.

SP0105: L. Ehrlich-Jones, USA

Motivational interviewing and self-regulation to increase physical activity in patients with RA.

• Daily physical activity in patients with rheumatoid arthritis (RA) have positive effects on patients’ physical activity behaviour. However, patients relapse in their old sedentary behaviour within 3 months after the programme.

• In 2011 a 5-week combined intervention that targeted both the motivation and self-regulation skills was performed to increase physical activity in the short- and long-term among insufficiently active patients with RA.

• This minimally resource-intensive intervention combining motivational interviewing and self-regulation coaching is an effective intervention to increase physical activity levels in patients with RA.

SP0106: E. Hurkmans, Netherlands

Education, monitoring and outcome in providers of a self-regulation program to increase physical

activity in RA.

- Caregivers are not always prepared to guide patients to physical activity.- Importance of getting feedback on behavior in real setting in

order to increase caregivers training.

– The PARA 2010 study: a two-year program to implement health-enhancing physical activity in persons with rheumatoid arthritis (RA). During the first year, twelve physiotherapists (‘physio coaches’) guided the participants to increased physical activity using their everyday environment as well as public gyms and regular support group meetings.  The physio coaches are trained according to crucial concepts in Social Cognitive Theory focusing on self-efficacy for coaching, feed-back on performance, and observational learning.

Results will be presented next year.

SP0107: I. Demmelmaier, Sweden

Promoting physical activity through mass media: the US centers for disease control and prevention’s health communication campaign targeting physical

activity among people with arthritis.

• 36% of general population are inactive in US. 44% with arthritis.

• One solution is to promote the activity on mass media campaigns.

• Campaigns objectives: increase beliefs, knowledge, confidence and behavior.

• “I’m active: busy all the time”. Exercise is more tan just staying busy

SP0108: T. Brady, USA

Promoting physical activity through mass media: the US centers for disease control and prevention’s health communication campaign targeting physical

activity among people with arthritis.

• In 2010 the CDC Arthritis Program released a revised version of the campaign Physical Activity.  The Arthritis Pain Reliever.    

• The revised campaign was based on 5 rounds of audience research (24 focus groups; 91 individual interviews) on physical activity-related attitudes, perceptions, and preferences among people with arthritis. 

• The campaign was designed to change physical activity-related knowledge, confidence, and behavior among people with arthritis. 

•   Results of the pilot-test surveys indicate that the campaign was able to capture audience attention (42% read/heard something about relieving arthritis pain with physical activity in the last month) and increased physical activity or intention to be physically activity (16% increased physical activity in past month in response to something they heard or read, and 41% were somewhat or very likely to increase physical activity in next month).

SP0108: T. Brady, USA

Friday 8th of June 2012:

HPR abstract session: Evidence into clinical practice – the way

forward

Clinical outcomes of nurse-led care for people with RA: a multicentre RCT.

• Despite the development of the innovative rheumatology nurse-led clinics (NLC) in the UK, the evidence of their effectiveness is limited.

• AIM: To compare the outcomes of NLC to those obtained by rheumatologist-led clinics (RLC) for people with RA. The null hypothesis tested is that NLC is inferior to RLC.

• Results: Patients under NLC (n=91) were comparable to those under RLC (n=90) NLC made fewer medication changes, ordered fewer X-Rays but made more conferrals, gave more patient education and psychosocial support than RLC. There was little difference in the numbers of referrals made to other health professionals.

OP0194: M. Ndosi, UK

Nurse-led rheumatology clinic versus rheumatologist clinic in monitoring of biological therapy –a randomised controlled study

• Patients with rheumatic diseases treated with biological therapy are usually followed up by rheumatologists. Nurse-led rheumatology clinics have been proposed for patients with low disease activity or in remission.

• Objectives: To compare treatment outcomes from a nurse-led rheumatology clinic and a rheumatologist clinic for patients treated with biological therapy with low disease activity or in remission.

• Results: After 12 months 97 patients completed the study. – In change of DAS28 there were no differences from inclusion to 12 months. – There were no differences (p>0.05) in mean change after 12 months in ESR, swollen and

tender joints, global health and pain visual analogue scales (VAS) or Health Assessment Questionnaire (HAQ) between the patients followed up at the nurse- led rheumatology clinic or the rheumatologist clinic.

OP0195: I. Larsson, Sweden

Multidisciplinary education for people with rheumatoid arthritis – a systematic literature review

• Objectives: To gain an overview of the didactic elements in multidisciplinary disease-specific education for people with rheumatoid arthritis (RA).

• Methods: A systematic literature review was based on research articles published between 2000 and 2010. The Didactical relationship model. Elements of the model: learning conditions, contextual factors, goals for teaching, the content, the learning process, evaluation.

• Conclusion: all six ítems were not consistently described in any of the articles. There is a need for detailed descriptions of the didactic element in studies concerning multidisciplinary disease-specificeducation for people with RA.

OP0196. R. Petersen, Denmark

Many patients with RA remain physically inactive• Limited data are available on the frequency of physical exercise in

RA patients.• Recommendation for activity in RA by national health authorities

are available.• Aim: to assess self reported physical activity and explore factors

associated.• Methods: Oslo Rheumatoid Arthritis register ORAR Mail

questionnaire.• Results: high level regular activity (more that 3 times weekly)

21%; low level 31%; some 2,7%; inactive 35%;rest, inactive because handicapped.

• About half of RA patients in Oslo are physically inactive.• Factors associated to physical inactivity: years of education,

physical function, self efficacy.

OP0197. T. Uhlig, Norway

No prospective association found between obesity and chronic, widespread musculoskeletal pain in a population based 20 year

prospective follow-up study.

• Objectives: To investigate the prospective association between obesity and CWP.

• Methods: In a twenty year population based prospective cohort study (the “Musculoskeletal pain in Ullensaker Study”), a random sample (n=855) of persons between 20 and 62 years in 1990 living in the municipality Ullensaker in Norway, participated in postal surveys in 1990, 1994, 2004 and 2010.

• Results: BMI in 1990, 1994 and 2004 was not related to CWP in 2010, but female sex, poor perceived health, poor sleep quality and smoking were associated with a significantly higher number of pain sites. CWP in 1990, 1994 and 2004 was not related to obesity in 2010, but being male and poor perceived health were associated with higher BMI in 2010 .

OP0198. K. Magnusson, Norway

CDSM for people with musculoskeletal and mental health problems: steppingup - a new flexible web-based system to serve patients, clinicians and organisations.

• Objectives: 1. Develop and test a web-based CDSM support system for patients with a wide range of musculoskeletal problems, concurrent mental health problems (ie anxiety, depression) and challenged by physical and socioeconomic isolation 2.Build a CDSM system that emulates how experienced practitioners work with clients - including a wide range of flexible modules and decision support that ensures practitioners are well supported to deliver best-practice in chronic disease self-manage support

• Methods:.Participants took part in an initial phone interview, and then worked independently through a personalised set of modules over several weeks (4 to 10, depending on their needs and lifestyle). Participants accessed weekly email support as part of the intervention, and took part in a phone review upon conclusion.

• Conclusions: The Stepping Up intervention was found to be highly acceptable to patients and clinicins. It can achieve significant improvements in emotional distress, behaviours, skills, and social support in clients. Implementation is progressing in Australia and UK.

OP0199. R. Osborne, Australia

How many objective measurement tools are needed in knee osteoarthritis assessment?

• Objectives: To determine the association and correlation among common subjective measuring toolsfor knee osteoarthritis: EQ, WOMAC and VAS

• Methods: 120 patients with radiologically confirmed knee osteoarthritis were evaluated with Visual Analogue Scale (VAS) for pain, Western Ontario and McMaster Osteoarthritis Index (WOMAC) for functional status, and EQ-5D for Health related quality of life. That measures werecompared and the concordance (Kappa Index) among the three guides calculated

• Conclusions: The high degree of association between WOMAC and EQ suggests that only one of them would be enough to get general health status data. EVA was mismatched respect to the others instruments nevertheless, so it could be useful variable to add information. We would need inquireif the different point in time which every tool takes in account to collect patient information influences these results.

OP0200. L. Martín-Martín, Spain

Development of user-focused standards of care for rheumatoid arthritis the www.EUMUSC.net project work package 5.

• Objectives: The purpose of Work package 5, as a part of the EUMUSC.net project, was to develop evidence based and user-focused standards of care (SOC), for Rheumatoid Arthritis (RA).

• Methods: A systematic review of international documents covering SOC for RA was conducted. National scientific societies, social leagues and health professional associations were contacted via the EULAR secretariat and asked to provide relevant documents. Documents concerning pharmacological and non-pharmacological interventions published after 2002 were included.

• Results: 49 types of therapies or other interventions, such as DMARDs, biological agents, exercise based-, activity based interventions, were extracted from the documents and could be grouped into seven types of interventions, namely Pharmacological Treatment, Monitoring, Lifestyle Interventions, Surgery, Education/ Information/ Self Management, Non- Pharmacological Treatment and Access to care. From these data 16 user-focused standards of care were formulated.

OP0201. M. Stoffer, Austria.

Friday 8th of June 2012:

Joint clinical/HPR/PARE session

Coping strategies to support families affected by RMD

– Imagine wearing a a neoprene diving suit ….

– Ways of coping: individual centred coping with active dealing, controlable stressors, communication; surrounding centred coping with integratiion of organizations and institutions and affected child or parent.

– www.cg-empowerment.ch

No abstract available. C.Galfetti, Switzerland©

The wider impact of chronic diseases on family and society from the carer’s

perspective.

• Hannelli Döhner (Germany) SP0144– Unable to attend

Challenges faced by parents with a child having a rheumatic disease.

• 2006 Adelka’s was diagnosed by a JIA

• The shock of the onset of the disease.

• “We did not want to belong to the club for parents with children with arthritis”.

SP0145. Bukovsky S and M, Czech Republic

Families, partners and friends, the ones’ left out.

“Communication soothes the way and relationship are strengthened. Patients feel free to express their feelings and seek for help. Partners and families feel free to share their feelings and are more supportive”.

OP0258-PARE. S. David, Cyprus

Multi-lingual touch screen page on arthritis in children (DINFO)

• BURG (Norwegian association for children and teenagers with rheumatic diseases)

• DINFO is a multilingual tool for information guide for young patients, easy and can be used on touchscreens, iphones, ipads, PCs.

• For getting info about juvenile arthritis : everyday life, facts, treatment, offers, exercise videos.

• htto://hospitality.no/dinfo_burg/

OP0259. JS Sagen, Norway

Friday 8th of June 2012:

HPR session: clinical update in connective tissue disease

Guidelines for the management of primary systemic vasculitis application to practice

• The ANCA –associated vasculitides (AAV’s), are a group of rare, potentially life-threatening conditions which if untreated can be fatal.

• Management of AAV– The aim of treatment is to induce remission, preserve organ function, and

reduce mortality and toxicity of medication. Treatment should commence as early as possible to avoid irreversible organ damage.

• Treatment is mainly split into three phases – 1) induction of remission– 2) maintenance and – 3) long term follow up.– Guidelines have been published for the management of AAV and there is general consensus that cyclophosphamide and steroids

are the first choice for induction of remission. Once remission is achieved azathioprine continues to have the safest profile – These patients require regular and careful follow up to assess organ function and damage, early detection of disease relapse and

detection of drug toxicity and side effects of medication.

SP0157: J. Mooney, UK

Assessment and management of SLE in a nurse led clinic

• SLE (systemic lupus erythematosus or lupus) is a multi-system auto-immune connective tissue disease of unknown aetiology.

• Lupus specialist nurses  assess for evidence of disease activity and formulate treatment plans in agreement with the specialist team and patient.

• By fully involving the patient in their care, the specialist nurse is available to provide information about potential risks, alerting the individual to the red flags that need immediate action and guide the patients in the development of self management skills to improve outcomes.– Key messages from this session include:

• To gain an understanding of the important role of the lupus nurse specialis• To recognise the importance of easy access to specialist lupus teams when the

disease is most active• To understand the importance of empowering the patient to gain control of

their disease activity and to improve outcome

SP0158: SJ. Brown, UK

Exercise therapy in SLE

• Low physical activity has been reported in systemic lupus erythematosus (SLE).

• Studies state that between 23- and 59 % of patients are physically inactive• There are many reasons for patients with SLE to be physically active: reduced

aerobic and exercise capacity and muscular strength, pain, fatigue, anxiety, depression and the risk of osteoporosis and cardiovascular diseases.

• These study results also indicate that aerobic exercise is safe, showing no increase in disease activity and organ damage in patients with low-to-moderate disease activity and low disease severity.

• However, the studies are few, long-term studies are lacking and results on aerobic capacity concerning physical training with less supervision or no supervision are contradictory: more studies are needed.

SP0159: C. Boström, Sweden

What’s new in rehabilitation of systemic sclerosis?

• In patients with systemic sclerosis, physical disability may be a result of fibrosis in the internal organs as well as the musculoskeletal system.

• In recent years clinical studies evaluating effectiveness of rehabilitation demonstrated promising results.

• Rehabilitation modalities aiming to improve musculoskeletal impairment include heat application, range of motion and stretching exercise, massage and joint manipulation and splints.

• In order to improve functional capacity other rehabilitation programs contained aerobic exercise and strength or resistive exercises.

SP0160. A. Schouffoer, Netherland

Saturday 9th of June 2012: EULAR projects in HP

I’ve been asked to review a clinical guideline – where do I start?

Clinical guidelines – What is it? And are they really useful in my daily practice? Workshop session

• Patients, authorities and the professional themselves ask today for evidence-based examinations, prognosis, and treatments.

• For almost 20 years the Cochrane Collaboration and a number of journals have published systematic reviews in order to systematically combine all research results within a certain clinical area.

• A Clinical Guideline: by identifying all relevant research results, evaluating the quality of the research, summing up the results (for instance by meta-analyses) and by involving both clinical practitioners, researchers and not at least patients in interpreting these results, it is possible to formulate specific recommendations for the clinical practice.

• The lecture addressed how a CG is developed, evaluated and suggestions for use of CG in clinical were given.

SP0179: H. Lund, Denmark

Introduction to critical appraisal of clinical guidelines

• The number of Clinical Guidelines (CG) is constantly increasing and the quality of CGs differs largely. For this reason, a critical appraisal with standardized instruments is important.

• The aims of this appraisal are to determine the quality of CGs and to ensure that those with the highest quality will be disseminated and implemented.

• An appropriate international standard for assessing the methodological quality of CGs represents the “Appraisal of Guidelines for Research and Evaluation (AGREE II) Instrument” (www.agreetrust.org).

SP0180. T. Vliet Vlieland, Netherland

Audience participation

SP0180. M. Stoffer, Austria

Saturday 9th of June 2012: EULAR projects in HP

Cardiovascular health in rheumatic diseases

Picturing the problem: cardiovascular disease impact in inflammatory rheumatic disease.

• Inflammatory rheumatic diseases, particularly rheumatoid arthritis but also the spondyloarthropathies (SpA), associate with increased cardiovascular disease (CVD) morbidity and mortality. 

• Classical CVD risk factors, including hypertension, dyslipidaemia, insulin resistance, altered body composition/obesity and decreased physical activity are more prevalent in these conditions and may contribute to the increased risk. 

• Systemic inflammation, characteristic of all these conditions, also plays a role but it remains unclear whether this is due to direct effects on the vasculature or mediated through effects on the classical risk factors. 

• Assessment of CVD risk in these conditions remains a challenge, as the widely used in the general population risk algorithms all underestimate actual risk in people with inflammatory rheumatic diseases:  disease specific risk algorithms need to be developed and validated, so that they can then be used to inform effective prevention strategies. 

• Systematic identification and management of classical CVD risk factors, together with effective control of systemic inflammation are essential.

SP0196: G. Kitas, UK

Screening and assessing cardiovascular risk in inflammatory arthritis

• The importance of identification of modifiable cardiovascular risk factors in people with inflammatory arthritis is now well established.

• The author shared their experience of cardiovascular health screening in a rheumatology clinic, in Peterborough including a nurse lead clinic, which we have been running over the last 10 years. 

• The author described how they have carried out the screening.

SP0197: A. Meadows, UK

Why is cardiovascular training important in people with rheumatic diseases?

• Exercises have traditionally been recommended as an important part of the management program for people with rheumatic diseases.

• Cardio-respiratory fitness is known to have a protective effect against prevalence and mortality of CVD in healthy adults and cardio-vascular training is shown to have the potential of modifying CV risk factors and inflammation in healthy adults and other patient groups.

• Despite lack of evidence, it is reasonable to suggest that similar associations exist for people with rheumatic diseases. Therefore, to optimize the beneficial health effects, it is important to include also cardio-vascular training in exercise programs delivered as part of the disease management for people with rheumatic diseases. 

SP0198: H. Dagfinrud, Norway

Implementation of effective cardiovascular training principles in daily practice

• Objective: To present an overview of dissemination and implementation strategies and illustrate this with the example of implementing effective cardiovascular training for people with rheumatic diseases, e.g. Ankylosing Spondylitis (AS), in daily clinical practice.

• Conclusions: The key to successful implementation is a well planned and prepared process and systematic approach, no matter if the project is large or small and independent from aims, content or setting. Effective implementation helps to close the gap new evidence and daily practice and to provide the best available care to patients.

SP0199: K. Niedermann, Switzerland

Take Home Message

• Plan your next trip to the EULAR congress• Give input to the EULAR HP Standing

Committee regarding the program• Take a look at the EULAR website

regularly• Have a save journey and see you next year!