EULAR general report autum meeting
Delegate feedback from the 14th EULAR Autumn Conference for People with Arthritis/Rheumatism in Europe (PARE), Athens, Greece 24-27 November 2011 “Move to Improve” by Lorna Taylor
As a physiotherapist and Trustee of BackCare – the charity for healthier backs, it was a delight and privilege to attend the above conference which focussed on physical activity (with a specific focus on young people at this year’s conference). As a “first-time attendee”, I hope you enjoy and find my reflection useful.
EULAR – is the European League Against Rheumatism connecting scientists, clinicians, people with arthritis/rheumatism, health professionals and those with a common endeavour. It is over 50yrs old! Doctors, health professionals and patients (3 pillars) are full members of the EULAR Executive committee. Initiatives involve research, education and lobbying. Its aim is to “reduce the impact of RMDs on the individual as well as on society and to improve the social position as well as Quality of Life of people with RMDs by all means”.
PARE (People with Arthritis/Rheumatism in Europe) – is one of the 8 Standing Committees of EULAR and represents patients. Their newsletter “EULAR Breakthrough” is a clear and informative read.
So, this is how your views can reach the top for consideration, action and change!
I was amazed at the coming together of so many different patient organisations across Europe and their different representatives, both sufferers of RMDs and others. So many of the approx. 150 delegates spoke brilliant English – incredible to see, hear and be part of. Translation headsets were also available. The atmosphere was lively with lots of active discussion!
Standing Committee Meeting of PARE – Terms of engagement were approved by the Board followed by a review of PARE European activities by Neil Betteridge (Vice-president of PARE). Disability issues, transport and access are being communicated at a high parliamentary level. Lobbying will continue to enable EULAR to be best placed to receive EU funding for research as part of Horizon 2020 (decision 2013). A template letter will be sent out to member organisations to assist – please put forward your thoughts. National organisations are being encouraged to work together so efforts can be focussed and are more effective with an “aim to share”.
Rheumatic and musculoskeletal diseases (RMDs) comprise all painful conditions of the musculoskeletal system. Over 200 have been identified. Many such as arthritis and osteoporosis are among the most common diseases in Europe and represent one of the highest costs to European healthcare and socioeconomic systems. Workdays lost account for over 650million Euros per year, direct costs in EU estimated to be 2% of GDP (EULAR Horizon 2020 Position Paper “Towards a Common Strategic Framework”).
World Arthritis Day 2011 Move to Improve was supported in 40 countries on all 5 continents (25 in Europe). Next year’s event will also be Move to Improve Oct 12th 2012 with the aim of having a simultaneous event across Europe. Suggestions are requested for a themed event and/or symbol e.g. green ribbon etc? Everyone is encouraged to view the new website www.worldarthritisday.org for further information. It is really easy to navigate and has a topic each month to inspire you to get moving! Sharing information through social media is also encouraged.
75 entries were received for the Action Shot photo competition with winning entries being included in the EULAR 2012 calendar Gert Sprangers on his recumbent bike towing his baby in a trailer won and attended the Conference.
Abstracts are requested for the Berlin Conference (Annual European Congress of Rheumatology)http://www.eular.org/index.cfm?framePage=/abstracts.cfm from patients and health professionals. Please follow the link and submit by the 31st January 2012. Hot topics include “inclusive design, how to get a job and keep it, co-morbidities and impact of RMDs on family life”. You can apply for a travel bursary too.
The hosting ELEANA organisation (Hellenic League Against Rheumatism) arranged a fully accessible trip to the beautiful Limni (Lake) Vouliagmeni in the morning and after lunch, the hard work began.
EULAr President, Maxime Dougados explained how EULAR enables a great opportunity for countries to exchange, share and integrate good practice and is uniquely represented by its 3 pillars (doctors, patients, health professionals). The Strategic Plan and Objectives are being reviewed by August 2012 but input is needed by members. National Country replies are needed and response encouraged to questionnaires sent out.
Dr Dimitris Kassiomos of the hosting organisation then gave a view of RMDs in Greece. There are only 17 NHS rheumatology consultants and 5 paediatric rheumatology physiotherapists in Greece which I found surprising as a UK Physiotherapist. It seems resources are stretched even further in Greece, both for adults and children. The “Fit for Work” approach is just beginning in Greece. The work of ELEANA is fundamental for patients. A short, thought-provoking film was played “Small pleasures – only few things are visible, others and most of them are invisible, but you can see it and do it, if you really want it”.
Marios Kouloumas, Chair of PARE Standing Committee then presented a further “EULAR update on recent and future activities”. This included the “Working Wonders Exhibition which supports patients and employers to help patients stay in work. It has been presented in 20 countries. EULAR can be contacted if you wish to have it at your event. Educational visits are recognised as being very important to exchange and share work and are of great benefit to PARE members. The application form has been made easier for next year and again, applications are encouraged (Application Form: Knowledge Transfer Prject). The Brussels Declaration on RMDs was also mentioned as too was the importance of Horizon 20120 which could considerably increase further funding of research in MSDs.
After a break the Workshops began. This involved all delegates attending their pre-chosen choice of workshop. A power point presentation was prepared within each workshop group and then presented by a facilitator with an interest in the topic back to everyone. Each group had 1h 15mins to prepare their presentation! Workshops were:
- EUMUSC.NET a collaborative project on common European standards of care and healthcare quality indicators.
- State of Play – the implementation of the Brussels Declaration on national and future activities.
- Latest developments on the topic of work – updates around the EULAR Charter for Work and the Fit for Work Initiative
- How to activate and include young people with RMDs (which I attended).
The poster exhibition competition was displayed before dinner. Approx 20 posters were displayed ranging from initiatives in the Netherlands to increase physical activity in patients in association with private medical providers, research showing the impact of lupus on health-related quality of life and work productivity, EUMUSC.Net an information and surveillance network across 17 countries supported by EULAR and the European Community (providing Musculo-skeletal statistics) and the Youth Exchange “Lets Act Now” Programme by the Estonian Youth Rheumatism Association which involved 50 young people from across Europe coming together for a public awareness raising event “I have a secret”. The later was the worthy winner of the most innovative category. The hosting country’s (ELEANA) poster also won the “most beautiful poster” in what felt like Eurovision Song voting – Worthy winners too!
DAY 3 began with optional morning gymnastics before breakfast and after a review of Day 2, Maxime Douglas (Rheumatologist at Rene Descartes University, Paris & EULAR President) presented “Osteoarthritis (OA) : burden of the disease and therapeutic options”. Reporting on the 63 responses to the EULAR survey 30% said they do some moderate or vigorous activity once or twice a week (walking 33, swimming 23, cycling 15). 40% were physically active everyday (housework 29, gardening 11, looking after children 10). Barriers to sports or being physically active were pain (61%), no time 58%, lack of energy/fatigue 53%. Interesting, barriers commented on included a lack of trained teachers/instructors (resulting in fear of causing more damage) and cost.
In OA, joint cartilage is affected; this causes clinical symptoms and structural changes. Primary and secondary cartilage damage can occur. Primary damage starts in the cartilage without any other inflammatory disease. Secondary damage is caused by other joint structures affecting the cartilage e.g. synovial membrane enzymes in RA cause OA after approx. 10 years of having the disease – so patients will often have RA and OA. Women are affected more than men across countries and there is a clear prevalence between age and OA. In men over 60yrs 60% will have finder joints affected, 25% knees, 6% hips. However, severity is more important than prevalence. 27.5% of the population have significant disease and/or disability in the research quoted. It is alarming to think that this represents millions of people across Europe yet we still don’t know who to treat it optimally.
Vast amount of research suggests obesity has a massive impact on suffering OA, as will trauma (car/ski accident etc) Also there is a strong debate over the effects of excessive sporting activities in children between 10 and 14/15yrs old when the cartilage is growing.
Treatment options were discussed and a checklist shared but unfortunately no new cures were shared. Exercise/activity, physiotherapy, information and education played a large part. Pharmacological treatment and surgery were also options. Suggestions were made that Intra-articular joint injections (corticosteroids) were more beneficial than toxic systemic (affecting whole body) pharmacological treatments. Interestingly, slow acting symptomatic drugs (eg. Glucosamine sulphate, chondroitine and Diacerein) are viewed differently amongst the medical profession. Those in Southern Europe believe they have a carry-over effect which helps cartilage and are looked at as treatment, but Northern Europe they are only seen as diet supplement.
Interestingly it was shared that corticosteroids are never used systemically as they were previously linked to heart attack and stories ran in the media. Consequently in 2004, treatment switched to less effective pain relieving analgesics but mortality due to hip fracture has increased 15-20% because dizziness is a side effect of analgesics, especially in 80+ years. Dizziness leads to falls and falls to hip fracture. The speaker felt this was a mistake and that it is important GP’s consider their patients holistically when weighing up risk and benefits (which can be monitored) when prescribing treatments.
Also noted was that drug research today is exceedingly difficult and costly. When Diclofenac came on the market approx. 20 years ago, it had a study sample of 170 patients, the latest drug has not been accepted even though it had a sample of 45 000 patients.
Following this excellent presentation, Thea Vliet Vlieland (Dept of Orthopedics, Leiden University, The Netherlands) presented “Exercise and Physical Activity in Hip and Knee Osteoarthritis”. She explained how exercise and physical activity are “hot topics”, but both need to be the “specific intensity, duration and frequency needed to have health benefits”. Recommendations from the American College of Sports medicine and the American Heart Association for older adults:
Men and women over 65 years and adults 50-64 years with chronic conditions and/or functional limitations should take:
30 minutes of physical activity at moderate intensity level on most days of the week (i.e. at least 5 days) and/or 20 minutes of physical activity at vigorous intensity level on at least 3 days of the week.
Moderate intensity is being out of breath but able to hold a conversation, easily perspiring, 5-6 out of 10 effort rating (if 0=sitting and 10=all-out effort).
Vigorous intensity is 60-80% of Maximum Heart Rate (MHR), 7-8 out of 10 effort rating. MHR = 220 – age. (i.e. 170 MHR for a 50 year old, 60-80%, HR 130-136bpm during vigorous intensity).
Muscle strengthening activity: 8-10 exercises on 2 or more non-consecutive days of the week using the major muscle groups. 10-15 repetitions for each exercise. Moderate to high intensity.
Flexibility and Balance activity: exercises to improve balance to reduce the risk of falls and flexibility exercises (going to the end of range of joint movement) on at least 2 days a week for at least 10 minutes a day.
The importance of an activity plan was emphasised to: address each recommended type of activity, identify how, where and when it is performed, gradual approach in 10 minute bouts for those who are currently inactive, self-monitor and re-evaluate planes . A physiotherapist can help monitor and advise.
“From Research to Action” a Swedish initiative on exercise has been very important and helpful. As a physiotherapist, I accepted the recommendation that “health care professionals should assess physical activity levels, recommend physical activity as a self-management strategy and refer patients to physical activity programmes as people with RMDs should engage in moderate physical activity on a regular basis to help control their condition”.Current recommendations on the management of hip and knee OA put much emphasis on non-pharmacological management.
Recent research shows that after knee and hip joint replacement surgery, pain and function improve greatly but patients only increased their physical activity by 8%. This highlights that there is a small window of opportunity to instil physical activity habits after surgery and health professionals need to be helping with this. Other quality of care research surrounding hip and knee surgery from the UK showed that there is a large variation in practice. In the Netherlands, the BART (Beating Osteoarthritis) stepped model of care initiative ensures conservative care is organised and received before surgery. In Scandinavia the BOA (Better management of patients with Osteoarthritis) initiative exists. Many internet-based exercise programmes are now out and their effectiveness is being studied. A EULAR project is also helping to enable the formation of “Recommendations for the non-pharmacological management of OA of the hip and knee”. Currently, the steering group are working to substantiate recommendations with literature.
Following a short break, another workshop session occurred to discuss the draft EULAR Document on Physical Activity for people with RMDs, a campaigning tool for use by EULAR and national organisations of PARE with policy makers and other key stakeholders.
Workshop 1 (which I attended) focussed on the first part of the document which provides a context for why it is important that people with RMDs should be physically active. Workshop 2 on the second part of the document which specifies the health benefits of physical activity for people with RMDs. Workshop 3 on the part of the document dealing with the “calls to action” requiring policy makers, health service providers and sports bodies to make changes that can encourage and enable people with RMDs to be physically active. Workshop 4 focussed on what information might make the document stronger and what support materials EULAR could provide to national organisations of PARE to help them in their campaigns to help people with RMDs be physically active.
After all that hard work and lunch, we had a memorable sight-seeing tour of Athens with a trip to the new Acropolis Museum.
The evening consisted of the Share Fair where the Knowledge Transfer Program (former Educational Visits Program) was discussed and the new Application Form reviewed and commented upon. A revised form is to be made available and organisations are encouraged to apply for a maximum of 10 000 Euros. The 2012 submission deadline is 30th April 2012.
The impressive Conference Dinner commenced at 8pm and everyone enjoyed the Greek dancing!
Day 4 again began with morning gymnastics before breakfast, there were many aching joints from the night before! After breakfast, a fascinating presentation on “Psychological aspects of physical activity” was delivered by Dr Rinie Greenen (Psychology professor, Utrecht University, The Netherlands). His belief is that it is most important to live a valued and valuable life – fun exercise can help this so that 1-2 years you are still perusing exercise. The same guideline recommended amount of exercise was quoted from the previous presentation (see above). However, this is not often happening. 6 psychological principles to increase physical activity were explained and how these can be tackled in day to day life.
- Negative reinforcement – stop exercising before negative consequences (i.e. pain) ar experienced
- Positive reinforcement – choose a physical activity that brings joy, fun and satisfaction (see http://www.funtheory.com/ for a great example!)
- Autonomy – consider what you really want / what motivates you?
- Competence – Become competent in the physical activity (“yes, I can)”, professionals can help with this.
- Social relatedness – Find a companion to do the activity together
- Implementation intention – set a goal and plan – when? where?, for how long? With whom? = Goal (i.e. to take a walk with a friend on Sunday after lunch). Intentions should be concrete!
After this fascinating presentation and a short break the final Workshop session was undertaken. Workshop 1: Physical and psychological barriers to participating in physical activities – individual perspective. Workshop 2: Physical and psychological barriers to participating in physical activities – organisation’s perspective. Workshop 3: Exercise programmes for people with RMDs aged 30 +: Best practice on a national level. Workshop 4 (which I attended): Exercise programmes for young people with RMDs: Best practice on a national level.
The over-ridding common theme to be feedback from all 4 workshops was that patients feel they need increased knowledge to reduce fear they feel about what they can and can’t do in terms of exercise.
Physiotherapists and other healthcare professionals have a huge part to play in this, especially as there are so many types of RMDs. There was a call for more trained instructors within local gyms/leisure centres. Other suggestions included – incorporating the whole family, free taster sessions, having retired professionals’ on-hand within an organisation, contacting leisure centres to inform them of RMD patient needs e.g. hydro now happens at a local leisure centre in Ireland once a week as the temperature of the water is increased, sharing positive success stories, awareness raising amongst the general public (starting in schools) about patient needs, accessibility issues and it was felt that not enough exercise options are offered specifically for people with RMDs.
Surprisingly, pain and fatigue did not feature at all in the top 3 barriers to exercise from any of the 4 workshop groups when brainstorming! It suggests that society and healthcare professionals can have a huge positive impact on enabling people with RMDs to exercise.
After summing up by Marios kouloumas and Neil Betteridge, the Conference ended and good friends made over the 4 days began their journey home. Some fantastic work was achieved in such a short time. I hope this is shared and acted upon in the forthcoming weeks and months to benefit those with RMDs.
Thank you for reading and I hope you enjoy the web links included too!