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In this Issue● Interviewing the next Chairperson Tanja Stamm

● Farewell by Peter Oesch and John Verhoef

● A European research project: The Educational Needs Assessment Tool (ENAT)

● Susan Oliver: Mapping the patient’s healthcare journey

● Psychologist in the multidisciplinary team

● Christina H. Opava: Is rehabilitation still needed in the era of biological drugs?

● Confronting RA-related fatigue

In recent years there have been some projects inEurope for highlighting the role of patients withmusculoskeletal conditions in the training of healthprofessionals. Examples include the Patient Partnerproject in which patients participated in the trainingof general practitioners for identifying the earlysymptoms of rheumatoid arthritis, and theOsteoarthritis Communicator project (OAC), inwhich people suffering from osteoarthritisparticipated in the training of physiotherapists.

Similar projects have been carried out in Finland,too. About a decade ago a project was launched fortraining members of twelve different groups of long-term conditions to give lectures to professionals ofthe social and health care sector. The activity startedin nine localities in eight vocational health careschools and one medical faculty. The experienceswere good. Feedback from teachers and studentswas positive. As is often the case in fixed-termprojects, however, the activity faded out in abouthalf of the participating teaching units after theproject funding stopped, but in five localities theactivity still continues.

Experience in the core A year ago a new project was launched in Finlandwith an aim to make this so called experience-basededucation a systematic part of teaching in allvocational social and health care schools andmedical faculties. The project is backed by as manyas 24 non-governmental organizations representing,

2 Newsletter of the Allied Health Professionals in Rheumatology

FROM THE EDITOR

or two decades I have worked in varioustasks with people suffering frommusculoskeletal conditions. During thattime I have heard hundreds of stories

about how it feels to live with arthritis/rheumatismand what the condition involves in one’s life. I firmlybelieve that hearing those stories has helped mebecome a better health professional. Each story hasincreased my understanding about the effects of thecondition, about receiving help, about makinglifestyle changes and about the joy when thechanges are successful, and – above all – aboutpatients’ wishes on how to be encountered andheard.

Most of us probably remember, perhapsespecially from the early days of our careers,patients and clients who have made a greatimpression on us so we still vividly recall when wefirst met them. By sharing their own experiencesthey have given us new insights, summed up issuesin such a manner that it has deepened ourperspective to the daily life of a patient and therebyto one's own work as well. Should not all healthprofessionals have a similar opportunity toencounter the patient also as a guide and teacher? Atbest a patient could offer his/her experientialknowledge already during the early stages ofeducation, to supplement and perhaps concretizethe professional knowledge received from otherexperts/teachers.

From sporadic to systematicFor as long as professional health education hasexisted, patients have been used to provide concreteexamples and demonstrate the subject matter.Especially in clinical training it is important toencounter “real” patients, to consider theirsymptoms, possible diagnosis and treatment.Patients have given talks during lectures tosupplement other teaching. Sometimes the patientshave been “interesting cases” found at the ward;sometimes they have been acquaintances of theteacher. All in all, the activity has been sporadic, andthe method has not necessarily always been patient-oriented or holistic.

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Seestrasse 240CH-8802 KilchbergSwitzerland, www.eular.org

Jaana Hirvonen alsoacts as the projectmanager of the projectpromoting experience-based education.

Editorial office:Publisher: EULAR Standing Committee of Allied Health

Professionals in RheumatologyEditor: Jaana Hirvonen,

jaana.hirvonen@reumaliitto.fiEditorial assistant: Mikko VäisänenLayout & printing work: Heikki Hjelt. Markkinointipörssi Oy. Helsinki, Finland

On the cover:Main picture: Training at the Teach-The-Teacher Course in May20082008 at the Leiden University Medical Center, the Netherlands.Smaller pictures: Rehabilitation at Klinik Valens Rehabilitation centerin Switzerland.

Other pictures of the newsletter by Mikko Väisänen if not mentionedotherwise.

continue even after the project. One of the outcomesof the project will be a web portal containinginformation with which educational facilities andpatient organizations can co-operate to launch anddevelop experience-based education. Educationalestablishments will also have access to a data basewith contact information of all trained and qualifiedexperience-based educators.

As the project progresses I am increasinglyconvinced that experience-based education is a greatidea and should be part of various curricula, but a lotof work still remains to be carried out. And as we nowhave rolled up our sleeves, why not promote the issuealso on the European level. This could be a greatopportunity for a joint European project. Interested?Do not hesitate to contact me!

Jaana HirvonenEditorjaana.hirvonen@reumaliitto.fi

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for example, musculoskeletal conditions,neurological conditions, sensory disabilities andmental health problems. The aim is to makeexperience-based education part of the curricula ofdifferent professional groups and establish it as apermanent part of teaching. This naturally requireslobbying at the Ministry of Social Affairs and Health,at the Ministry of Education and in various units of theeducational administration as well as long-terminteraction with rectors and teachers of educationalestablishments.

One practical obstacle to an expansion of theactivity has been that experience-based educatorsshould also get a reasonable pay for their work.Schools often cannot afford to pay even for a travelexpenses allowance. Another challenge has been onthe level of attitudes: How can we assure that anexperience-based educator knows his/her job and thats/he really has something to contribute to theteaching? For example, I recently heard a comment,while explaining the activity to a group of physicians,that if a patient is allowed to talk freely, “s/he will justgo on complaining and telling what’s wrong.” Thismisconception, however, will usually change quicklyafter becoming familiar with experience-basededucation.

Certificate as guarantee of qualityTo provide assurance about the quality of theoperation to the educational administration andteachers, in health care schools and medical facultiesalike, a nation-wide certificate is being created forexperience-based education and a new trainingprogramme is being designed for experience-basededucators. The aim is to build the operation on thesame principles and quality standards irrespective ofthe location in Finland. The training programme isdesigned both by educational professionals andpeople who have worked as experience-basededucators representing various groups of disorders.The training programme is scheduled to be completedduring the present weeks after which it will be testednext autumn at five localities. The aim is to train 250new experience-based educators.

During the project all possible efforts are taken toensure that the experience-based education will

In this IssueThis AHP Newsletter is a special edition which will bein distribution at the EULAR Congress in Copenhagen.We will introduce a wide scale of topics related tohealth professional work in the field of rheumaticdiseases and musculoskeletal conditions. Jackie Hillwill highlight a cross-European health processionalresearch project which will further develop aquestionnaire called the Educational Needs AssessmentTool (ENAT). Susan Oliver tells about mind mapping asa means to explore the RA patients’ journeys in theheath care system. We also have an interview withMilena Gobbo who will discuss a psychologist’s role inthe multidisciplinary team. In her article, Christina H.Opava asks if rehabilitation is still needed in the era ofbiological drugs.We will also introduce an important thesis by HanRepping-Wuts on the impact of fatigue in RA – tomention only a few subjects of this issue. Enjoy theNewsletter!

”You just need to exercise everyday,choose a sport of your liking, followa special diet, take you meds, workon your psychological issues andstress levels, adapt self-helpmethods, relax daily, obtain properaids, furnish and modify the settingat work and at home to your needs,apply for social benefits, discussthe situation with your family andfriends, contact pier support, join apatient organization, and set goalsfor your future – that’s basically it– and you will be good as new in notime.”

4 Newsletter of the Allied Health Professionals in Rheumatology

CLOSE-UP

Interviewing the next Chairperson

Is the Austrian academic climate friendlytowards health professional research?– Few health professionals in Austria are involved inresearch. Austria is a very traditional country and thefirst master courses for health professionals started onlyin 2009! Students have to pay for their studiesthemselves, unlike in most other professional fields,where the students receive state funding for their master

anja Alexandra Stamm is theChairperson elect of the EULARStanding Committee of the AlliedHealth Professionals (AHP). She was

born on the 10th of December in 1973 inVienna, Austria. She has studied occupationaltherapy and educational science in Vienna. In2002, she completed the European Master ofScience Programme in occupational therapywhich took her to Sweden, Denmark, theNetherlands, and UK. She completed anothermaster degree for business administration andmanagement at the Technical University ofVienna in 2003. In the same year, she startedher doctoral studies in Munich, Germany, and Eastborne, UK, which she completed in2005 and become PhD in 2007. In December2007, she was awarded the postdoctorallecture qualification as a Private Docent1 (inGerman: Privatdozentin) at the MedicalUniversity of Vienna for Health Sciences(Gesundheitswissenschaft).

Since 1999, Tanja Stamm has been a researchscientist and a leader of the clinimetry (clinicalstudies) team at the Department of InternalMedicine III, Division of Rheumatology, at theMedical University of Vienna. Her researchinterests are outcome measures, the WHOInternational Classification of Functioning,Disability and Health (ICF) in rheumatology andrehabilitation, occupational science andqualitative studies related to the experiences ofpeople with chronic rheumatic diseases.Furthermore, Tanja Stamm coordinatesinternational multi-centre clinical trials calledStop Arthritis Very Early (SAVE) and DefinitiveIntervention in New Onset Rheumatoid Arthritis(DINORA).

How long have you worked as anoccupational therapist and how did you getinvolved with scientific research?– After graduating from occupational therapy (OT)school in 1995, I worked for two years in an orthopedichospital on a children’s ward and meanwhile studiededucational science at the University of Vienna. Our OTteam in this hospital tried to start research on theeffectiveness of our interventions in patients withosteoarthritis. However, we were not very successfuldue to the limited time and knowledge. Besides, wewere not working in an academic environment. This iswhen I noticed that I wanted to get involved in research,and I finally applied for a position at Josef Smolen’srheumatology department at the Medical University ofVienna.

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Tanja Stamm lives in Vienna. She is married to Philipp Graf and hasone son, Adrian Wolfgang who was born in August 2007.

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1 Private docent is a title used in some European university systems,especially in German-speaking countries, for someone who holds allformal academic qualifications to become a university professor.

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Presently, seventeen European countries have arepresentative in the AHP Standing Committee. Atthe moment, EULAR has four national AHP memberorganisations: the British Health Professionals inRheumatology (BHPR), the health professionals inrheumatology Switzerland (hpr), the NetherlandsHealth Professionals in Rheumatology (NHPR), andthe Swedish Rheuma Forum (SveReFo).

New members are welcome to join. Please contactthe EULAR secretariat for further information,anja.schoenbaechler@eular.org.

Websites:The British Health Professionals in Rheumatologywww.rheumatology.org.uk/bhpr

The health professionals in rheumatologySwitzerland www.rheumaliga.ch/ch/hp_health_professionals

The Netherlands Health Professionals inRheumatology www.nhpr.nl (only in Dutch)

The Swedish Rheuma Forum www.sverefo.nu/en/index.html

The national representation in the EULAR StandingCommittee of Allied Health Professionals in Rheumatology

Austria Czech Republic Denmark

Estonia Finland Germany

Italy Lithuania the Netherlands

Norway Poland Slovakia

Slovenia Spain Sweden

Switzerland the United Kingdom

courses. One of my aims is to contribute to increasingthe professional status of health professions in Austria.One possibility to do so is being involved ininternational activities, such as EULAR.

Is multidisciplinary teamwork common inAustria? – Multidisciplinary teamwork is not very common inAustria because of the low professional status ofhealth professionals. It is more common that medicaldoctors “prescribe” what should be done by healthprofessionals. Furthermore, if any teamwork shouldexist, medical doctors are the leaders of thesemultidisciplinary teams.

How could we in practice emphasize the importanceof multidisciplinary teamwork in Europe?– I think that health professionals should have equalopportunities in terms of education, status, andemployment all over Europe. This can be our futuregoal. This would also upgrade the quality of ourservices in health care system and offer our patientsthe possibility to receive the best and state-of-the-artmultidisciplinary care available.

Are there some aspects in multidisciplinarywork that we should be critical about? – In my opinion, multidisciplinary work should be trulymultidisciplinary – not exclusive in terms of someprofessions not being represented – or in terms of oneprofession being always the leader of a team.Furthermore, I think there should be an openatmosphere for self-reflection within each profession,but also within a multidisciplinary team.

What kind of issues would you like to bringup as the next Chairperson?– As the Chair of the Standing Committee of AHPs, Iwould like to facilitate the funding of health professionalresearch projects in EULAR. I would also like to start amentor programme and a platform for exchange foryoung researchers in the health professions. My dreamwould be to increase the number of PhDs within thehealth professionals and thus, to have AHP supervisorsand mentors working as a consultants in clinical workand in research for young researchers. Also, we shouldaim to have equal academic environment for all AHPsin Europe.

Contact information:Dr. Tanja Stamm, PhD, MSc, MBAMedical University of ViennaDepartment of Internal Medicine IIIDivision of RheumatologyVienna, AustriaTanja.Stamm@meduniwien.ac.at

6 Newsletter of the Allied Health Professionals in Rheumatology

TIME FLIES

e all know that time runs fast. Indeed,sometimes surprisingly fast. Four yearshave already passed since Peter becameEULAR’s Vice-President representing the

Allied Health Professionals and two years since Johnbegan his term as the Chairperson of the EULAR AHPStanding Committee.

We would like to take the opportunity to thank allthe people who have helped to further develop theEULAR Allied Health Professionals organization inthe last years. We have seen a tremendous growth ofactivities which would not have been possiblewithout the support of the EULAR Secretariat inKilchberg Switzerland, the Executive Committeemembers, and our health professional colleaguesfrom different European countries.

The EULAR support includes grants for AHP travelbursaries and educational visits but most of all, theprovision of the yearly AHP research grant of 30 000Euros. In addition to this grant, EULAR decided at itsMarch Executive Committee meeting in 2009 to

Farewell by Peter Oesch and John Verhoef

support the research project of Dr. Jackie Hill on thevalidation of the Educational Needs Assessment Tool(ENAT). This European project will involve colleaguesfrom eight different countries. Please read more onthis project in this Newsletter.

The interest for co-operationWe are especially pleased to notice the growingnumber of the national health professional memberorganizations in EULAR. At the moment, Switzerland,the Netherlands, the United Kingdom, and Swedenhave official member organizations in EULAR, andNorway, having established in 2008 a national HPorganization, will apply for membership this year at theGeneral Assembly. This is in line with one of theStrategic Goals of the Standing Committee of AlliedHealth Professionals within the EULAR strategy 2012stating: “We will have encouraged local initiatives forestablishing the foundation of five new national AHPorganizations in Rheumatology thus enabling them tobecome official members in EULAR”. We very muchhope there will be more national HP organizations tofollow. We have heard rumours that Denmark andSpain are also in the process of establishing a nationalorganization.

A further highlight for us was to witness theincreasing interest of European health professionals toactively contribute to the annual AHP scientificprogramme at the EULAR congress. Also theaccelerating volume of AHP abstracts submitted tothe congress makes us very proud. This kind of AHPinput and international co-operation enables thecreation of an impressive multidisciplinary congressprogramme which hopefully attracts AHP colleaguesto attend the congress and thereby raises theawareness for the importance of high standard carefor people with arthritis, rheumatism, and othermusculoskeletal conditions.

The Teach-the-Teacher CourseIn May 2008, another highlight for us was theimplementation of the AHP course providing anevidence-based post-qualification introductoryeducation programme on osteoarthritis andrheumatoid arthritis which meets the clinical needs ofAHP’s working in the field of rheumatology. Thiscourse, developed by us and sponsored by EULAR,was a pilot Teach-the-Teacher Course forphysiotherapists, nurses, and occupational therapists.The 23 participants from nine countries gathered forfour days at the Leiden University Medical Center, theNetherlands.

There were twelve physiotherapists from the CzechRepublic (1), Croatia (1), Estonia (1), Hungary (1),Lithuania (3), Poland (3), Italy (1) and Portugal (1), eightrheumatology nurses from the Czech Republic (1),

John Verhoef and Peter Oesch were more than satisfied with thepopularity of the AHP booth at the EULAR Congress in Paris lastyear.

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Estonia (1), Hungary (2), Italy (2), Portugal (1), Spain (1)as well as three occupational therapists from the CzechRepublic (1), Estonia (1), Portugal (1). The course was agreat success and a similar course will be held at theend of 2009 in Brno, Czech Republic.

Making connectionsMost importantly, we want to congratulate Editor JaanaHirvonen and Editorial Assistant Mikko Väisänen forthe AHP Newsletter you are now reading. It is in ouropinion an excellent tool to facilitate networking

between the European health professionals as well aswith our colleagues around the globe. Please make useof the newsletter, send it to your colleagues and givesuggestions to the editor about interesting healthprofessional themes.

We wish our successors the very best for the future andvery much hope you will continue to support them intheir activities.

Peter Oesch and John Verhoef

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Dear AHP colleagues

For the second time after the congress 2008 in Paris, itis our pleasure to invite you all to the official AlliedHealth Professional (AHP) booth. This is youropportunity to meet your colleagues from otherEuropean countries and the United States during thecongress. The AHP booth will be located in theEULAR Village in hall C5.

The EULAR village is a new invention at thecongress. The idea is to regroup all EULAR socialactivities to a same floor and to create an area forinformal meetings. Most of the EULAR-relatedactivities and sister societies will be displayed in thevillage.

European AHP organizations as well as theAssociation of Rheumatology Health Professionals(ARHP) from the U.S. have the opportunity to presenttheir national organizations and interact with otherrepresentatives. Please take advantage of this specialoccasion.

See you there!

Peter OeschAHP Vice-President representing the Allied HealthProfessionals

John Verhoef Chairperson of EULAR AHP Committee

Tanja Stamm Chairperson elect of EULAR AHP Committee

10–13 June 2009: The preliminary programme at the AHP booth

Wednesday Thursday Friday Saturday

Please notice the AHP 10:15 – 11:15congress programme Network Meeting for on page 18. Nurses

Chair: Heidi Zangi (N)

11:45 – 13:30 11:45 – 13:30 11:45 – 13:30Lunch break: sandwiches Lunch break: sandwiches Lunch break: sandwichesand beverages available and beverages available and beverages available

12.00 – 13:00Network Meeting for PsychologistsChair: Erik Taal (NL)

16:30 – 17:00 17:00 – 18:00 17:00 – 18:00Welcome Meeting Network Meeting for Network Meeting forChair: Tanja Stamm (A) Physiotherapists Occupational Therapists& Kare Birger Hagen (N) Chair: Carina Boström (S) Chair: Ingvild Kjeken (N)

The AHP booth is an excellent meeting point for the healthprofessionals attending the EULAR Congress.

8 Newsletter of the Allied Health Professionals in Rheumatology

esearch has shown that patients and healthprofessionals can have different beliefsabout what information is needed andwhen. The ENAT questionnaire can help to

provide the right information at the right time, and as itwas developed with patients with arthritis, it includestopics that patients deem important.

The questionnaire is easy to fill in and takes aboutfive minutes of the patient’s time. When I was testingthe ENAT in Leeds, a number of patients told me thatthey thought it was an excellent questionnaire and theywished they had been able to complete it before.

In the UK, our research has shown that the ENATquestionnaire can be used with patients withrheumatoid arthritis (RA), osteoarthritis (OA), psoriaticarthritis (PsA), ankylosing spondylitis (AS), systemiclupus erythematosus (SLE), scleroderma (SSc), andfibromyalgia (FMS). As well as its use in clinicalpractice, the ENAT can be used as an outcome tool forresearch or audit, thus having the potential to promoteevidence-based practice in all professions.

A major European research grantIn 2004, I was awarded the EULAR AHP grant to workwith European colleagues to translate the ENATquestionnaire into Dutch, Finnish, Norwegian,Portuguese, Spanish, and Swedish. We tested thetranslated versions with patients with RA andperformed a Rasch analysis to make ensure themeasurement properties remained stable. Thetranslated ENAT questionnaires were successful, as wasthe experience of working with my Europeancolleagues. I think we all gained such a lot from thecollaboration and when I approached them asking ifthey would be willing to undertake a further study theywere all eager to be involved. The next logical stage for

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The major rheumatic diseases areprogressive, disabling conditions causingsignificant levels of pain, reducedpsychosocial status, and morbidity. Healthprofessionals spend much of their timegiving advice and information to helppatients understand and self-manage theircondition.

CROSS-EUROPEAN PROJECT

Helping patients to understandtheir disease - The EducationalNeeds Assessment Tool (ENAT)

Jackie Hill isvery pleasedto co-ordinate thenow continuingENAT study.

the ENAT work is to assess its use in other majorrheumatic diseases and so I applied for a secondEULAR grant in 2009. I was surprised and very happythat this multidisciplinary European research projectapplication was accepted.

The study requires patients to complete thetranslated versions of the ENAT on just one occasion.We will need between 125 and 150 patients from eachof the disease categories (AS, FMS, OA, PSA, SSc andSLE) from each of the seven countries (Austria, Finland,the Netherlands, Norway, Portugal, Spain, andSweden). Patients will be recruited from rheumatologyoutpatient clinics, day units,inpatient wards, data bases,and from the community;in fact, any location inwhich the patient canbe contacted andproviding they have adefinite diagnosis ofthe target disease. This

The ENAT questionnaire has sevensections:1. Managing pain – medications, using heat/cold,

distraction, relaxation, exercise, acupuncture,hydrotherapy

2. Movement – practical devices, lifting, energyconservation, rest/sleep, joint protection

3. Feelings – dealing with stress, moods/depression, fatigue

4. Arthritis process – cause, type of arthritis,heredity, treatments, disability

5. Treatments – need for medication, how to takeit, side effects, blood tests, X-rays, surgery,appliances

6. Self-help measures – alternative therapy,vitamins, what to avoid doing, exercises, howmuch exercise, when to contact a doctor ornurse

7. Support systems – helpful organisations,financial help, coping groups, getting the mostout of consultations

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will ensure that we have a good spread of gender, age,disease duration, and disease severity, a requirementfor Rasch analysis. As some of the diagnoses such asSSc and SLE are rare, these patients will be recruitedfrom more than one hospital or location in thecountries concerned.

A network of researchersThe grant is for three years starting in July 2009, andwill involve health professionals and patients fromeight European countries. I will co-ordinate the studyfrom Leeds, Mwidimi Ndosi, my research nurse, willundertake the Rasch analysis, and Helen Greenwoodwill undertake data inputting and administrative duties.We will be working with Tanja Stamm (Austria), MarjaLeena Kukkurainen (Finland), Thea Vliet Vlieland (theNetherlands), Heidi Zangi (Norway), Arménio Cruz(Portugal), Jenny de la Torre (Spain), and Elisabet WelinHenriksson (Sweden) and their teams.

If all goes to plan, we should have a well validatedquestionnaire in the not too distant future to helppatients from a number of European countries toidentify their educational needs. However, there areother benefits from the two research projects that wehave undertaken. We are building a European networkof researchers who are learning much from each other.I envisage that even when this project is completed, thelinks that we have forged will establish the foundationsfor further and expanding collaboration between healthprofessional researchers throughout Europe.

More information: www.leeds.ac.uk/acumen/

Dr Jackie HillACR Senior Lecturer in Rheumatology NursingAcademic & Clinical Unit for Musculoskeletal Nursing(ACUMeN)University of Leeds, UKj.hill@leeds.ac.uk

Sister Clare Kellett is helping Mrs. Gillian Bowskill to fill in theENAT questionnaire.

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Visit the AHP website

The EULAR AHP Standing Committee’s website is available atwww.eular.org/st_com_health_professionals.cfm.

At the website you can find information concerning the AHPCommittees activities and goals. The AHP committee encourageshealth professional research in rheumatic and musculoskeletaldiseases and works also for improving the patient’s role as the keyexpert of his/her own treatment.

You can also read the previously published on-line issues ofthe AHP Newsletter and join the e-mailing list of the newsletter.

10 Newsletter of the Allied Health Professionals in Rheumatology

IN FOCUS

There have been many excitingdevelopments in the field of rheumatology.However, to me, the most fascinatingjourney we have been on in the last decadehas been the increasing recognition of howvital it is that clinicians recognise thepatient’s perspective and that the patient’svoice should be integral to care and, in fact,the patient must be a partner in the decisionmaking process.

ast year at EULAR, I presented some of the keyfindings from the National RheumatoidArthritis Society Mapping project. We all usemaps from time to time – some of us are better

than others at interpreting and managing maps. In thisproject, we used the principles of process mapping usedin industry to explore the real experiences of patientswho had sero-positive Rheumatoid Arthritis (RA). Weused both process mapping and qualitative research toexplore the true experience of participants from firstpresenting symptoms to the first three years of diagnosisand treatment. The reason we were motivated toundertake this work was that, in many cases, as chair ofthe Royal College of Nursing Rheumatology Forum in theUK and Chief Nurse Adviser for the National RheumatoidArthritis Society (NRAS), I represented nurses or thepatient organisations in relation to developing standardsand guidelines. Yet, when exploring with NRAS some ofthe reports and queries received from the NRAS helplineit was clear that not everyone received the high qualitycare frequently cited as being what happened in clinicalcare and we wanted to understand more about this issue

Mapping the patient’s journey

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and how these differences impacted upon the individualwith their condition.

Starting the research processThe study was set up with qualitative researchers,clinicians (doctors, nurses, occupational therapists,physiotherapists, and podiatrist) working together withpatients as members of an advisory panel overseeing theresearch processes and guiding the project. Patients wererecruited with an open invitation. The researchercontacted the participants and asked for them to collectall their notes together about their RA. Details about theparticipant were collected including age, sex,employment, geographical location, and whether theyhad been admitted to hospital or had surgery. Participantshad been diagnosed for three years or less at the time ofrecruitment.

What we wanted to do was ask about particular timepoints in the person’s journey with RA but we alsowanted to hear what each person thought about theirexperiences at key points in the journey. If you would liketo know more about the study process and look atindividual patient maps you can see them all by going tothe NRAS website www.rheumatoid.org.uk and puttingin ‘mapping patient journeys’ in the search section.

So what did we learn? We mapped 22 participants’ journeys and collected awealth of information about the true consequences ofdelays in being referred to a specialist; time to gettreatment benefits or access to treatments and how tonegotiate their specific healthcare needs. The studylooked at more than just the clinical perspective but alsohow this could lead individuals to make personal andearly decisions to change jobs or stop work and in somecircumstances retire early. To many patients, in thebeginning the whole issue of healthcare and what washappening was a bit of mystery and rather confusing (seethe picture of a mind map).

The study demonstrated that in this group of RAparticipants access to rapid diagnosis and earlytreatment (< 6 weeks) was only being achieved for asmall group of patients (7 participants) and of thosethe majority used private healthcare to access rapiddiagnosis and treatment (6 participants). Twoparticipants waited just less than 12 months beforethey were seen by a specialist.

Each person’s healthcare journey was mapped –that is, it was made into a real map showing the timefrom one step of the journey to another. The costs ofthe journey were calculated with the help ofresearcher from the London School of Economics.

It was clear from this small study that some patientswith aggressive disease were costly to the economyvery early on in their disease with one patientsdiagnosed > 2 years and < 3years 5 months had been

Susan Oliverwants to raiseawareness of thereal impact ofrheumatologicalconditions topatients.

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an inpatient for a total of 21 days. Yet, in the UK,patients are not eligible to receive anti-TNFa therapiesuntil they have failed two disease modifying drugsand have achieved a high level of disease activity(based upon the Disease Assessment Score counting28 joints) of over 5.1 twice (one month apart).

What did the patients say about theirjourneys? One participant recounted how she first heard herdiagnosis. She stated that the doctor took her to the nurseand handed the file to the nurse and he then told thenurse that the patient had RA. That was when she knewshe had RA.

Another recounted about who she managed to getinformation: ‘You need to ask, nothing offered’. Butothers had stated that they had ’nothing but praise’ for theway they had been looked after by all the healthprofessionals and the health service.

One patient said: ‘the first GP [general practitioner]was very helpful but I was not diagnosed at this time….the current GP has a specialist interest in RA….whichis wonderful’.

Another RA patient who had been diagnosed lessthan a year recalls the words used when she wasdiagnosed: ‘yes, I think you have RA, of the things youcan get this is what you did not want…you won’t getbetter’.

One participant recounted how her illness rapidlycaused a significant problem to her work and salary:‘…On long term sick leave since July 2004 [when sheshould have returned to work after maternity leave.]After 13 weeks, the basic salary was reduced by 25percent. This resulted in a loss of earning as well as aloss of company car’.

The car allowance amounted to the equivalent of £ 4,800. It took six months from first presentingsymptoms before she was diagnosed and treated.Earlier treatment might have kept this lady at work.

Another participant struggled with her relationship,the burden of a new diagnosis, loss of self esteem,changes in work, and ultimately financial challengesfollowed by depression. Having just got marriedduring the three year period, received her diagnosis ofRA, lost her job and ended up divorced living back athome with her parents caring for her.

Hearing the patients’ voiceImportantly, the journeys were very variable dependingupon the first healthcare professional they saw andwhether they had the knowledge and empathy neededthe provision of the local specialist team and whetherthey had access to a full multidisciplinary team, in manycases access to teams and information varied.

A wealth of information has been collected using thisapproach although it has to be remembered there arelimitations to this work. We do not always recall eventsas clearly as we might believe – so recall can be flawedand effected by how upset or anxious we are at the timebut also the level of information given and whether at thetime the information was given we were receptive tohearing the messages being given and if the informationseemed relevant and meaningful at the time.

The participants in this study were alreadymembers of a patient organization and therefore, hadalready demonstrated their ability and wish to accessadditional resources and support so they are probablynot truly representative of the general RA population.The study was small in terms of quantitative researchand the process used were unique at the time asprocess mapping had not been used in this way toexplore how care varied from standards andguidelines. Combining qualitative research principlesallowed us to hear the patient’s voice through theprocess of this research and still despite thelimitations shows us we still have much to do toensure we provide care that is consistent andrepresents the best in high quality care for all.

Susan Oliver Nurse Consultant SouthamptonUniversity NHS HospitalJoint chair of the RheumatologyFutures Project

More information:Susan Oliver: Exploring thehealthcare journey of patientswith rheumatoid arthritis:A mapping project – implicationsfor practice, Musculoskelet. Care6(4): 247–266 (2008)

The mind map shows why thehealthcare system may seem veryconfusing to patients.

NRAS/SUSAN OLIVER ©

12 Newsletter of the Allied Health Professionals in Rheumatology

TEAMWORK

The psychological point ofview from SpainPsychologists often help people solvequestions of everyday life. They attempt tounderstand the role of mental functions inindividual and social behaviour, and toexplore the underlying psychologicalprocesses. Psychologists have a great deal tooffer for the multidisciplinary team work.

s in the medical field, psychologists choosean area of specialization. In the best possiblescenario, people with rheumatic diseases andsevere musculoskeletal disorders could be

referred to a psychologist, who is familiar with thecharacteristics of their condition. Today, psychologistis a self-evident member of the multidisciplinary team.According to psychologist Milena Gobbo, this isstarting to be the case also in Spain. In the Spanishhealth care system, psychologists may work within therheumatologic unit and provide psychologicalattention from an integral perceptive by collaboratingwith other professionals of the unit. They can alsowork as a consultant for other health professionals, forexample generating a referral protocol forrheumatologist to determine which patients wouldprofit the most from psychological evaluation. Asmany of the treatments require the patient’s activeparticipation, psychological interventions areincreasingly used.

– Most chronic rheumatologic disorders requiremajor psychological adaptation. An expertpsychologist in rheumatic diseases can identify theprocesses which are part of the readjustment of achronic illness such as anxiety, depression, or loss ofself-esteem. Moreover, an expert is able to accuratelydiscern when these processes can be considerednormal or when more professional help is needed,says Gobbo.

Milena Gobbo is a new representative in theEULAR AHP Committee. She works at the SpanishSociety of Rheumatology and she is the Chairpersonof a local AHP organization called AEPROSER(Agrupación de Professionales de la Salud enReumatología). Her special areas of interest arefibromyalgia, rheumatoid arthritis (RA), and thetreatment of pain.

The aim of a psychological interventionPsychological treatment has proven its effectiveness inseveral aspects of rheumatic diseases. It is also cost-effective in the long run.

–Working with psychologists will provide

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advantages not only for the patient but for the wholehealth care system. Research studies prove thatpsychological treatment reduces the direct andindirect costs of health services, including the numberof days that people spend on sick leave, Gobbo notes.

Psychological approach may help the person andhis or her family members to adjust and understandthe impact of a disease in a comprehensive andholistic way. This is especially important when thediagnosis is unclear.

–The goal is to assist the patient to become a bettermanager of his or her own health, which willeventually improve the overall quality of live. Thehealthcare team will support the person in reachingthis goal, Gobbo explains.

The person’s perception of their condition is thekey factor in developing an adaptive behaviour and inpreventing a vicious circle of hopelessness andhelplessness. It is constructive to discuss probablebehavioural risk factors, anxieties, fears, or stress with

Milena Gobbo is eager to meet colleagues and other healthprofessionals in Copenhagen.

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a professional who can recommend the possibleresources at hand for better adapting to the newsituation.

– Many need to tackle the ways the disease mayaffect their social or sexual life or influence theircareers. The psychological intervention can smoothenthe perception of pain and the feelings of disablementby promoting an active and effective disease coping.Of course, treatment should always be adapted to theperson’s individual requirements and characteristics,Gobbo points out.

Psychologists may work with individuals, couples,families, or groups. There is a great variety ofpsychological methods and coping techniques whichcan be applied.

– Nowadays, it is even possible to offer the firststeps of treatment through the Internet. Some peoplemay prefer dealing with their personal issues onlinebefore coming to a face-to-face contact, Gobbo says.

Other forms of expertiseThe professional knowledge of a psychologist isespecially relevant in the planning and developmentof patient’s guidelines and various self-careprogrammes which normally underline the role ofpsychological well-being. On the other hand, somepsychologists are specialized in health professionaleducation, in areas such as advancement of socialskills related to patients, communication of bad newsand burnout management.

– It is also typical for psychologists to collaborate inresearch projects to reveal all the psychologicalaspects of the rheumatic disease in question. In this

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The biopsychosocialmodel is efficient inthe treatment ofpeople withrheumatic diseases.This model is alsoused in Spain.

Emotions

Coping

Self-efficacy

Helplessness

Cognitive distortion

Personality

Biopsychosocial factors in rheumatic diseases

Psychological factors

Social factors

Social support

Work ability

Pain behaviour Pharmacological management

Symptomatology

Physical injury

Biological factors

respect, the EULAR Congress is an important forumfor co-operation, Gobbo highlights.

She is very excited to participate in the congress inCopenhagen and meet the other members of the AHPCommittee.

– I would like to share ideas about the treatment ofrheumatic diseases from the different viewpoints ofthe specialists represented in the Committee andadvance the systematic use of the techniques andprocedures which have already demonstrated theirpositive effects in the treatment of people withrheumatic diseases, says Gobbo.

More information: aeproser.blogspot.comwww.ser.es/investigacion/Grupo_Trabajo/Aeproser.php

The Spanish AHP organization, AEPROSER, Agrupación Españolade Profesionales de la Salud en Reumatología, has members fromthe following professional groups: nurses, occupational therapists,physical therapists, psychologists, rheumatologists, rehabilitationphysicians, and psychiatrists. The picture was taken after a teammeeting with most of the groups represented.

14 Newsletter of the Allied Health Professionals in Rheumatology

The era of biological drugs – is rehabilitation still necessary?

AHP ASPECT

New biological drugs have been introducedduring the past decades and dramaticimprovements among those that fulfil thecriteria for prescription and benefit from thedrugs have been observed in clinical practiceas well as reported in scientific studies.

ntroduction of new drugs represents animportant step towards the ultimate solutionsto problems related to inflammatory diseases.It also sets the scene for changed paradigms

related to the care and rehabilitation of people withinflammatory rheumatic diseases. Some even seem tothink that rehabilitation is no longer necessary inrheumatology. This conception is problematic forseveral reasons. One is that data from many countriesindicate that only some 30 percent of patients withinflammatory rheumatic diseases enjoy the benefits ofbiological drugs. Another is that all aspects of thepatients’ health do not necessarily improveautomatically as a result of effective inflammatorycontrol. A third reason is the increased risk ofcardiovascular disease and premature death thatpatients with certain rheumatic diseases suffer.

Physical activity and drug treatmentWe studied aspects related to physical activity andphysical capacity among patients with early,medically well controlled rheumatoid arthritis (RA)included in the national Swedish RA-registry. Patientswere recruited at ordinary medical check-ups withtheir rheumatologists at 17 centres in central andsouthern Sweden and no exclusion criteria as to age,co-morbidity, or functioning were applied. Datacollection and intervention was performed byphysiotherapists within their ordinary clinical work.

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Christina Helging Opava was appointed professor in 2006. She is amember of the AHP Programme Committee.

Health Professionals Programme Committee

The Scientific Programme Committee of the Allied HealthProfessionals in Rheumatology is responsible for the scientificcontent and organization of the Allied Health Professionals sessionsand co-organizes the Joint Sessions at the Annual Congress.

The list of the AHP Programme Committee members is available at:www.eular.org/prgrm_committees_health_professionals.cfm.

Our findings show that only half of the patientsreached levels of physical activity recommended formaintaining good physical and mental health andavoid lifestyle-related diseases and premature death.A very high proportion of our sample had impairedmuscle function and other body functions (up to over

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90%) compared to gender and age matched controlswithout arthritis1. Low pain, enough levels of health-enhancing physical activity and good physicalcapacity but NOT low disease activity, wereindependent predictors of good health perceptionover one year2. In a conclusive randomizedcontrolled study, we found that a one-year coachingprogramme for health-enhancing physical activityresulted in improved health-related quality of life andbetter muscle function beyond the improvementsalready obtained from efficient drug treatment3. Thetransferability of our results is probably high as thestudy was performed in an everyday clinical contextwith a patient sample fairly representative of thepopulation in the national quality registry. The resultsindicate that efficient drug treatment givesopportunities for health-enhancing physical activity,improved functioning, better health perception, andprobably reduced risks of co-morbidity that may notalways be recognized with the present focus onremission and improved body functions withinrheumatology.

Modern methods for health promotionThus, rheumatologist should not only aim at remissionof inflammation among their patients but recognizethe opportunity for further health improvements, asktheir patients about health-enhancing physicalactivity, and refer at least every other to physiotherapyfor information, motivational support, counselling,and follow-up. Physiotherapists, on the other hand,should not only focus on improved body functionsbut consider abandoning traditional hands-ontreatment and adopting modern, efficient methods topromote health-enhancing physical activity amongtheir patients. Medical doctors and healthprofessionals within primary health care neededucation and training in order to take responsibilityfor the large group of patients with rheumatic diseasesin need of continuous support for such lifestyle-

related changes. It thus seems that rehabilitation isstill necessary for the majority of patients (~70%) thatdo not enjoy the benefits of biological drugs but also,with a different target, for those that use biologicaldrugs.

Christina H. OpavaProfessor in physiotherapyKarolinska InstitutetStockholm, Sweden

References:1. Eurenius E, Stenström CH, PARA study group.

Physical activity, physical fitness, and generalhealth perception among individuals withrheumatoid arthritis. Arthritis Rheum2005;53:48-55

2. Eurenius E, Brodin N, Lindblad S, Opava CH,PARA study group. Prediciting physicalactivity and general health perception amongpatients with rheumatoid arthritis. JRheumatol 2007;34;10-15

3. Brodin N, Eurenius E, Jensen I, Nisell R,Opava CH, and the PARA study group.Coaching patients with early rheumatoidarthritis to healthy physical activity: Amulticenter, randomized, controlled study.Arthritis Rheum 2008;59:325-31

Karolinska Institutet is one of the 18centres which has been approved as EULARCentres of Excellence.

Some patients with rheumatic disease may reach optimal healthalready with efficient drug treatment and inflammation control.Other may need additional rehabilitation in order to improvefunctioning and reach optimal health. The long-term perspective,including support for life-style-related change in order to avoid co-morbidity and premature death, should not be forgotten. Otherfactors related to environmental and personal factors should alsobe taken into consideration when targeting optimal health.

Optimalhealth Other factors?

Healthylife-style

Goodfunctioning

Inflammationcontrol

Health careresponsibility

Individualresponsibility

Optimalhealth

Optimalhealth

Optimalhealth

16 Newsletter of the Allied Health Professionals in Rheumatology

AHP THESIS

Confronting RA-related fatigue

lthough fatigue is a recognized symptom ofRA, only a few studies have focused on itstreatment. Fatigue is a multidimensionalconcept in which psychological,

biochemical, and physiological mechanisms play animportant role. Health professionals have a need forfurther information how to help and encounter RApatients suffering from chronic fatigue. This is the reasonwhy I choose fatigue as the subject of my thesis onnursing.

The impact of fatigue The thesis provided several interesting findings on RA-related fatigue. I found that 40 percent of RA patientsexperienced persistent and severe fatigue. The level offatigue was comparable to the fatigue described bypatients with chronic fatigue syndrome (CFS). I did notfind a relation with inflammation or a low level ofhaemoglobin, as often is assumed in clinical practice.Instead, disability and general well-being expressed bypatients seems to be related to fatigue.

Moreover, I found that RA fatigue is different fromnormal tiredness because RA-related fatigue beginsunexpectedly and ordinary sleeping or resting does notalways suppress it. Furthermore, fatigue causes inabilityto perform daily activities. It has a great impact onpatient’s every daily life; especially it affects the abilityto maintain social contacts and leisure activities.

More communicationPatients try to manage fatigue by trial and error, oftengaining poor results. They choose not to discuss fatiguewith health professionals because they simply accept or

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Then again, contradictory to patients, healthprofessionals are often under the impression thatpatients would communicate their symptoms offatigue with their rheumatologists or with other healthprofessionals, such as rheumatology nurses.

Bases on this, it can be concluded that fatigue,unlike pain, is not structurally discussed with patients.This lack of communication has to be addressed.There is a need for a brief and simple assessmentinstrument for measuring the symptoms of RA fatigue.This kind of a tool could help patients and healthprofessionals to communicate adequately about thecauses and treatment of fatigue. Multidisciplinaryteam work is essential. Furthermore, it would beworthwhile to educate rheumatology nurses to treatfatigue based on the method of cognitive behavioraltherapy (CGT). Further research is needed to prove theeffect of such a nursing intervention.

Dr. Han Repping-WutsNurse scientistRadboud University Nijmegen Medical CentreThe Netherlandsj.repping@cis.umcn.nl

Han Repping-Wuts hopesthat health professionals willfind new ways to encounterpatients with symptoms offatigue.

Patientswith

rheumatoidarthritis (RA) name

fatigue, besides pain,as the most difficult

symptom tohandle.

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n 2007, I received a EULAR grant for aneducational visit. I travelled to Bristol RoyalInfirmary in Great Britain especially to meetProfessor Sarah Hewlett and her research group.

I flew to Bristol for four days and was welcomed witha splendid visiting programme compiled by Sarah. I gotthe opportunity to meet several researchers who areperforming research on RA-related fatigue, all of themaimed at creating a better outcome for RA patients. TheBristol multidisciplinary research group focuses ondeveloping a validated fatigue questionnaire for RA, theeffectiveness of a self-management programme for RApatients, and a patient-generated core set. All researchersoffered me a well-described project of their PhD orresearch showing the great interest in fatigue as the mostimportant symptom in patients with RA. Moreover, I hadthe possibility to present and discuss my thesis with theresearch group. The education visit offered us anopportunity to plan feasible future collaboration onresearch on RA-related fatigue with the intention todevelop nursing interventions and health care educationto help patients to manage their fatigue.

My personal goal to overcome my fear in speakingEnglish was achieved as I gave a presentation withreplies to questions from the Bristol group and receivedlots of compliments. This great journey acted as astimulus for future research. So, for me it was aninspiring, motivating and stimulating educational visit.

Han Repping-Wuts

A visit worth-while

Educational visits

EULAR awards up to 10 bursaries for educationalvisits to Allied Health Professionals other thanphysicians working in the field of rheumatology toenable them to make an educational visit tocolleagues in another EULAR member country. Theamount of each of the bursaries is between € 750and € 1500. The total annual amount granted is €7,500.

The objective is to improve the standard ofresearch and care and to foster collaboration acrossclinical units in Europe.

The deadline for the next applications is the 31st ofMarch 2010. Applications for 2010 should be e-mailed to Ms. Caroline Pasche at the EULARSecretariat (caroline.pasche@eular.org). Applicationsshould include a CV with the date of birth, objectivesof the educational visit, a budget, a writtenconfirmation from the host hospital or institute, andthe tentative time frame of the training visit. Theapplication form and the contract to be signed withterms and conditions are available at: www.eular.org/health_professionals_educational_visits.cfm.

Recipients are required to submit a report to theEULAR Secretariat after the visit, focusing on theresults that have been achieved.

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The objectives for my visit

● To discuss the current practices for fatigue in RApatients

● To exchange knowledge and future research onRA-related fatigue

● To set up a research network for RA-related fatigue● To compose a joint article ● On a personal level, to conquer my fear for

speaking English

More information:

H. Repping-Wuts, J. Fransen, T. van Achterberg, G. Bleijenberg and P. van Riel: Persistent severe fatigue in patients withRheumatoid Arthritis, Journal of Nursing and Healthcare of Chronic Illness in association with Journal of ClinicalNursing 2007; 16(11c): 377-383

H. Repping-Wuts, R. Uitterhoeve, P. van Riel and T. van Achterberg: Fatigue as experienced by patients with RheumatoidArthritis (RA): a qualitative study, International Journal of Nursing Studies 2008; 45(7): 995-1002

H. Repping-Wuts, P. van Riel and T. van Achterberg: Rheumatologists’ knowledge, attitude and current management offatigue in patients with Rheumatoid Arthritis (RA), Clinical Rheumatology 2008: 27(12): 1549-1555

H. Repping-Wuts, S. Hewlett, P. van Riel and T. van Achterberg: Fatigue in patients with Rheumatoid Arthritis: British andDutch nurses’ knowledge, attitudes and management, Journal of Advanced Nursing 2009; 65(4): 901-911

H. Repping-Wuts, T. Repping, P. van Riel and T. van Achterberg: Fatigue communication at the out-patient clinic ofRheumatology, Patient Education and Counseling 2008: doi:10.1016/j.pec.2008.11.011

H. Repping-Wuts, P. van Riel and T. van Achterberg: Fatigue in patients with rheumatoid arthritis: what is known and whatis needed, Rheumatology 2009; 48(3):207-209

Sarah Hewlettorganized theeducational visitprogramme for HanRepping-Wuts.Hewlett is an Arc.Professor ofrheumatology andnursing in theUniversity of the Westof England.

18 Newsletter of the Allied Health Professionals in Rheumatology

EVENTS & NEWS

The AHP programme at the EULARCongress 2009 in CopenhagenThere will be a total of 13 sessions comprising the EULAR Allied HealthProfessionals programme at the next EULAR Congress in Copenhagen, Denmark,from 10 to 13 June 2009. Four of the sessions will be joint sessions organised withrheumatologists and the Standing Committee of People with Arthritis/Rheumatism inEurope (PARE).

The AHP programme 2009Session type Session title

AHP Meet the Standing Committee How to reach all people with arthritis with the best possible care?

AHP Abstract Session AHP abstract session

AHP Invited Speakers Session Prevention of fractures and falls in osteoporosisHip and knee osteoarthritis: Future Directions and Innovations inRehabilitationCan the International Classification of Functioning, Disability and Health(ICF) be of help in musculoskeletal conditions?How to improve the methodological standard in clinical trials of non-pharmacological treatment?Patient-centred research designs: How to include the patients?

AHP Workshop Spondyloarthropathies – assessing disease activity

AHP Highlight Session Highlights of the Allied Health Professional sessions Copenhagen 2009

Joint Session Do self-management approaches work for pain?Promoting life style changes to reduce cardiovascular risk factors in RAWork and RehabilitationImpact of rheumatic diseases on family life

Planning the EULAR Congress 2010 The next EULAR Congress will be held in Rome,Italy from 16 to19 June 2010.

The aim of the Congress is to provide a forum ofthe highest standard for scientific, educational andsocial exchange between physicians, healthprofessionals and researchers involved inrheumatology and liaising with patient organizationsto achieve progress in the care of patients withrheumatic diseases.

Abstract submission for Rome 2010The health professional abstract submission processis open until the 31st of January 2010.

Health professionals can choose to submit theirabstract either for practice and clinical care (topics

A1 – A5) or for health professional research work(topics 7 – 27).

For further information see the EULAR websitewww.eular.ch.

AHP travel bursariesEULAR offers travel bursaries for AHPs presentingtheir work during the congress. These travelbursaries will only be granted to the first author of anaccepted oral or poster presentation. Theapplication can be sent before a decision onacceptance of the abstract is made, as long as thereference number is given. The application forms areavailable at the EULAR website.

Do you have good news for the newsletter?

Since 2000, the AHP newsletter has functioned as themain information channel of the Allied HealthProfessionals in Rheumatology within EULAR. Thenewsletter is published twice a year featuring the workof Allied Health Professionals and all aspects ofmultidisciplinary collaboration in rheumatology.

Let us know about recent AHP dissertations, healthprofessional projects, research plans on AHP-fields(nurses, occupational therapists, physiotherapists,podiatrists, nutritionists, social workers, andpsychologists). Also news about the multidisciplinarydevelopment on the European level would be aninteresting theme or an interview with a specialist on AHP approach. Contact the Editorial office of AHP newsletter for further information atwww.eular.org/st_com_health_professionals.cfm.

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● Peter Oesch: The future strategy 2012

● Words from Fred Wyss

● Ulla Nordenskiöld: Historical retrospectives of the AHP

● Jaana Hirvonen: Multidisciplinary collaboration

● Educational visits and academic milestones

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In this Issue

● Challenge of rare diseases for health care professionals

● Words from AHP Vice President and EULAR Executive Director

● Introducing three national AHP organizations

● Thesis on Information Technology and health care

● The Osteoarthritis Communicator project

● Preparing for Paris 2008

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In this Issue

● Co-operation for better know-how

● Words from AHP Chairman and Vice-President

● Ernst Isler is ready for Paris

● Multidisciplinary health care services in the U.S.

● Josef Smolen: EULAR goes EU

● On the move against rheumatic diseases

● AHP dissertations and educational visits

A distinguished nomination to a Czech AHP Committee member

In February 2009, Jana Korandová, chief nurse of the institute ofRheumatology, was awarded the honor of the Nurse of the Year 2008in the category research and education. The Nurse of the Yearcompetition is a highly respected event in the Czech Republic. Thecandidates compete in three categories: nurses in the home care, inthe hospital and/or inpatient care and nurses in research andeducation. According to the jury, there was an especially largenumber of nominees with notable references in this year’scompetition. However, Ms. Korandová received full points from allthe jury members.

For eighteen years, Ms. Korandová has been actively involved inthe care and of research of rheumatologic diseases. She is devoted toimprove the role of heath professional work in the Czech Republicand she is a dedicated member of EULAR AHP Committee. InOctober, Ms. Korandová will organize an AHP course on themanagement of Rheumatoid Arthritis (RA) and Osteoarthritis (OA).The course will be held in Brno, Czech Republic.

Jana Korandová is an honorarymember of EULAR.

The EULAR Health ProfessionalsResearch GrantEvery year EULAR funds one health professional’sresearch project in the field of arthritis/rheumatismthat is in line with the mission, objectives and goals ofEULAR. Projects will be funded up to a maximum of € 30,000.

Recipients of a research grant must submit a mid-term report to the Scientific Committee of the EULARHealth Professionals on the progress of the researchproject. After completion of the project the recipientsmust report to the EULAR Executive Committee on theresults achieved. Furthermore, the recipients areexpected to present their project in the EULAR AHPnewsletter and may be invited to present their findingsat the annual EULAR congress.

Application processApplicants must complete the official applicationform (including detailed budget), and include the fullCV of the project leader as well as a project plan. Forfurther instructions see the official application formavailable at:www.eular.org/myUploadData/files/AHP%20Research%20Grant%20application%20form.doc.

Applications for 2010 should be e-mailed to Ms.Caroline Pasche at the EULAR Secretariat (caroline.pasche@eular.org) to arrive no later than the 31st ofDecember 2009. Applications will be evaluated bythe Scientific Committee of the EULAR HealthProfessionals in early 2010. Applicants will beinformed by e-mail.

The following evaluation criteria will apply:● Scientific value● Implementation and relevance for EULAR Health

Professionals (i.e., how the project may improvethe non-pharmacological management of patientsin a short and/or long-term perspective, and/orwhether the project may foster the development ofa research network of relevance for the futurebeyond the period of the project)

● Quality of the work plan and methods● Feasibility of the study within the planned

timeframe● Patient-centered approach (if applicable)● Budget realistic for the planned project● Planned dissemination and implementation of the

research results

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In this Issue

● Evaluating the Teach-The-Teacher course

● The management of work ability

● Life stories in research

● Picture résumé from EULAR Congress

● Sexuality and MSD

● Canada: Patients as equal partners in research

● Social worker in the multidisciplinary team

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MEMBERS OF THE EULAR STANDING COMMITTEE FOR HEALTH PROFESSIONALS 2009

John Verhoef, J.Verhoef@lumc.nl, Chair, PT, THE NETHERLANDS

Tanja Stamm, Tanja.Stamm@meduniwien.ac.at, Chair-elect, OT, PhD, AUSTRIA

Peter Oesch, p.oesch@klinik-valens.ch, Vice-President, PT, MSc, SWITZERLAND

Jaana Hirvonen, jaana.hirvonen@reumaliitto.fi, Newsletter Editor, Psychologist, FINLAND

Elzbieta Bobiatynska, ebobiatynska@post.pl, Sociologist, POLAND

Carina Boström, carina.bostrom@ki.se, PT, PhD, SWEDEN

Ute Donhauser-Gruber, ute.donhauser-gruber@rtz-nuernberg.de, PT, GERMANY

Diana Finney, diana.finney@southdowns.nhs.uk, Nurse, UK

Urs Gamper, u.gamper@klinik-valens.ch, PT, SWITZERLAND

Milena Gobbo, milena.gobbo@ser.es, Psychologist, SPAIN

Satu Gustafsson, satu.gustafsson@turunreumayhdistys.net, PT, FINLAND

Barbka Huzjan, barbka.huzjan@kclj.si, OT, SLOVENIA

Katarína Jedlickova, jedlucha@post.sk, Nurse, SLOVAKIA

Ingvild Kjeken, ingvild.kjeken@nrrk.no, OT, PhD, NORWAY

Jana Korandová, korandova@revma.cz, Nurse, CZECH REPUBLIC

Katti Kõrve, katti.korve@itk.ee, Nurse, ESTONIA

Jill Lloyd, lloydjill@hotmail.co.uk, PT, UK

Antonella Moretti, Antonella.moretti@asl5.marche.it, Nurse, ITALY

Ruta Sargautyte, rutas@freemail.lt, Psychologist, LITHUENIA

Lene Mandrup Thomsen, lmthomsen@gigtforeningen.dk, PT, DENMARK

Jenny de la Torre, delatorre_jen@gva.es, Nurse, SPAIN