1. Highlights EULAR 2012
Health Professionals Sessions
Jenny de la Torre Aboki
RN MSc PGdipRheum PhD candidate
Alicante General and University Hospital
Alicante –SPAIN-

2. Wednesday 06th of June 2012:
How to run an osteoarthritis clinic
in daily practice
Describing various organizational models for
osteoarthritis clinics

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. Thursday 7th of June 2012:
Joint clinical/HPR/PARE session
Patient involvement in research.
Past, present and future

11. 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

12. 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

13. 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

14. 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

15. 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

16. Thursday 7th of June 2012:
HPR session
Promotion of physical activity in
rheumatology targeting patients, providers
and the public

17. 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

18. 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

19. 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

20. 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

21. 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

22. Friday 8th of June 2012:
HPR abstract session: Evidence
into clinical practice – the way
forward

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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.

31. Friday 8th of June 2012:
Joint clinical/HPR/PARE session

32. 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©

33. The wider impact of chronic diseases on
family and society from the carer‟s
perspective.
• Hannelli Döhner (Germany) SP0144
– Unable to attend

34. 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

35. 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

36. 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

37. Friday 8th of June 2012:
HPR session: clinical update in
connective tissue disease

38. 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

39. 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

40. 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

41. 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

42. Saturday 9th of June 2012:
EULAR projects in HP
I‟ve been asked to review a clinical
guideline – where do I start?

43. 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

44. 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

45. Audience participation
SP0180. M. Stoffer, Austria

46. Saturday 9th of June 2012:
EULAR projects in HP
Cardiovascular health in rheumatic
diseases

47. 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

48. 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

49. 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

50. 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

51. 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!