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eular HEALTH PROFESSIONALS NEWS Newsletter of the Allied Health Professionals in Rheumatology Volume 8. No 2/2007 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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Page 1: EULAR 2/2007 19.12 · The Osteoarthritis Communicator project Preparing for Paris 2008. ... On the cover: Rehabilitation at Klinik Valens Rehabilitation center in Switzerland. eular

eularHEALTH PROFESSIONALS

N E W S

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y Volume 8. No 2/2007

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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2 Newsletter of the Allied Health Professionals in Rheumatology

WORDS FROM THE EDITOR

Challenge of rare diseases for health careprofessionals

Editorial office:Publisher: EULAR Standing Committee of Allied Health

Professionals in RheumatologyEditor: Jaana Hirvonen,

[email protected] assistant: Mikko VäisänenLayout & printing work: Heikki Hjelt. Markkinointipörssi Oy. Helsinki, Finland

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

On the cover: Rehabilitation at Klinik Valens Rehabilitation center in Switzerland.

eular

veryone working in the realm ofmusculoskeletal disorders may have metmany people suffering from rheumatoidarthritis or fibromyalgia, but how many has

encountered a person suffering from Ehlers-Danlossyndrome or scleroderma? Does it make anydifference whether a person suffers from an ordinaryor a rare rheumatic disease? Does the rarity of adisorder somehow affect the way in which a patientis encountered or services are organised?People suffering from rare diseases encounter ahigher than average number and rate of challengesrelated to diagnostics, care and coping with thedisease. Diagnoses are often delayed and effectivetreatments are missing for many rare diseases. Thenumber of units specialised in the care of thesediseases is small or they are located far away. Up-to-date information expressed in plain language iseither non-existent or difficult to find, and otherpersons suffering from the same disease may perhapsnever be met, and yet it is precisely access toinformation and peer support that have emerged asespecially important issues in service need queriesput to people suffering from rare diseases.

What amounts to rare?Rare diseases are a heterogeneous group. Theestimated number of them is from six to eightthousand. Even though the number of people inindividual diagnosis groups is not great, even as many

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Jaana Hirvonen is the new editorof EULAR AHP newsletter. UllaNordenskiöld, the former editor,left a great legacy to build on.

as 6 % of Europeans are estimated to suffer from somerare disease taking into account all diagnoses. Thereis, however, no standard definition for rare disease asyet. According to the most common definition,applied in the EU, a disease is considered to be rare ifthe maximum number of people suffering from it isfive per a population of ten thousand. In the Nordiccountries the criterion used has been stricter: one pera population of ten thousand. In addition tooccurrence, the definition provides that, in addition toits rarity, the disease hampers daily life – the mere"exotic" diagnosis is not enough. Indeed, rare diseasesare, by nature, often chronic, systemic, andprogressive if not treated efficiently, and may even becauses of premature death.

Need of action plansThe special needs of people suffering from rarediseases have gradually raised awareness in variousparts of Europe. When organising various serviceentities and operations such as care paths and peersupport to people suffering from rare diseases, amore aware and systematic working method isneeded than is the case for the major diseasesaffecting the general population. Service mustpossibly be concentrated in few care units, for somediseases expertise can perhaps be found only in afew units in all Europe. A person suffering from a raredisease may also slip through the net in socialsecurity issues; an effective drug may not be

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compensated for the treatment of a rare disease as it isfor some more common disease, in which case theperson suffering from a rare disease must pay a higherrate for the medication. Special action plans areneeded for securing the care, social security andquality of life of people suffering from rare diseases.The development is most advanced in Norway whererare diseases and care rights of people suffering fromthem were defined in the legislation already someyears ago. Action plans have been carried out in othercountries, too, such as in France and Portugal.

EU and Rare diseasesThe status of people suffering from rare diseases has beenunder consideration also in the European Union. A publicconsultation document has been prepared for summingup the elements of the EU policy concerning rare diseasesand for facilitating the possibilities of patients to getaccess to appropriate and prompt diagnosis, care, andinformation. The goals section of the document presents14 questions e.g. about the classification of rare diseases,availability problems of rare medication, andrecommendations concerning social and educationservices. The Commission expects answers to thequestions, from people interested in the matter, by 14February 2008 – Valentine's Day. Does your workcommunity have thoughts about developing services topeople suffering from rare musculoskeletal disorders? Itpays to influence, now it is possible on the Europeanlevel. The document can be found athttp://ec.europa.eu/health/ph_threats/non_com/cons_rare_dis_en.htm.Another important date will occur in February. On theleap day, 29 February 2008, the 1st European RareDisease Day will be celebrated with the motto "A rareday for very special people." The day is co-ordinatedby Eurordis, European Organisation for Rare Diseases.The goal is to promote the status of people sufferingfrom rare diseases and to raise awareness about rarediseases by means of various media campaigns andevents in various parts of Europe. It is great that Europe isbecoming increasinglyaware of the special needsof people suffering fromrare diseases. Ultimatelythe people who suffer fromrare diseases crave for the same things as thosesuffering from any disease:timely, competent andmultidisciplinary care, andsupport and resources forcoping with the disease.These are familiar andbasic thoughts also to theAllied Health Professionaloperation.

Jaana HirvonenEditor

Examples of rare rheumatic diseases ● Ehlers-Danlos syndrome● MCTD● Myositis● Relapsing polycondritis ● Scleroderma● (Adult onset) Still´s disease ● Vasculitis: for instance Takayasu Arteritis,

Wegener Granulomatosis etc.

Web sites dealing with rare diseases: ● www.eurordis.org (English, French, German,

Italian, Portuguese, Spanish)● www.orpha.net (English, French, German,

Italian, Spanish)● www.rarelink.dk (Danish)● www.rarelink.se (Swedish)● www.rarelink.no (Norwegian) ● www.rarelink.fi (Finnish, under construction) ● http://iier.isciii.es/er/ (Spanish)● http://www.cafamily.org.uk/dirworks.html

(English, UK based)

In this IssueThe special theme of this EULAR AHP newsletter isco-operation and communication in their broadsense. Topics include e.g. a doctoral thesis about theuse of IT technology in multidisciplinary interaction,and a multinational project about people sufferingfrom osteoarthrosis as trainers of health careprofessionals. This issue also introduces threenational Allied Health Professional organisations and discusses preparations of the Paris congress.Enjoy your reading! The editors are glad to hear fromstory tips about interesting perspectives tomultidisciplinary work and about ongoing researchprojects and projects developing rheumatic care.

The art of multidisciplinary teamwork?

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4 Newsletter of the Allied Health Professionals in Rheumatology

WORDS FROM AHP VICE PRESIDENT

Mobilizing the planet – EULAR onits way towards 2012

According to EULAR'sExecutive Committee:“EULAR gathers togetherthe most diverse andtalented people in therheumatology world. Manyof our members havecreated major advances inour field. Our scientists and doctors, together withour clinicians, healthcareprofessionals, patients, andsupporting staff have madeextraordinary work possible.Few disciplines haveachieved so many changesin recent years. Diseasesare now modified. Peopleexperience mobility where

before there was morbidity.But how are we going to create the next majorstep? What is the best way to channel our efforts?We have created a platform of eight areas inwhich we think effort could best be focused.Some are purely medical, such as finding newsolutions to old diseases. Some are political:gaining awareness, recognition and resourcesfrom the wider public. Others are more abouthow we work. We want to see morecollaboration across professional bodies, and alsointernational borders. We want our discipline tobecome the most attractive to young minds.After all, if we don’t mobilize the planet, whowill?”

activity portfolio in order to reshape and refocus it forthe years to come. Already in early 2008, theExecutive Committee will be able to approve a first setof specific projects and measures in the field ofrheumatology that will contribute to further“mobilizing our planet”.

The AHP goals within the EULAR strategyFirst steps to achieve the defined AHP goals havealready been taken. One of the AHP’s aims is toachieve a closer partnership with international healthprofessional’s organisations. We had the pleasure tohave Karen Kerr, President of the Association ofRheumatology Health Professionals (ARHP) attendingour Standing Committee Meeting and ScientificCommittee Meeting in Barcelona. In return, theEULAR AHPs were invited to the ARHP internationalrelations luncheon held during the ACR meeting inNovember 2007. We were there represented byProfessor Kristina Opava from Sweden. ProfessorOpava is a very well-known international researcherin the fields of rheumatology and member of the AHPscientific committee. We are very happy thatProfessor Opava volunteered to represent the EULAR AHP at the ACR. As a result from these initialcontacts, it was decided to have one representative ineither congress planning committees. The practicaldetails will be discussed in December 2007 andshould take place for the planning of the Copenhagencongress programme 2009. We also want to establishcloser relations with other international healthprofessional organisations. A next step can hopefullybe taken by Peter Oesch representing the EULAR AHPat the next CARE conference held in Oslo from 23rd

to 25th of April, 2008.However, we also want to establish closer relationshipswith European AHP organisations. Furtherimprovements were already possible here! It is ourpleasure to announce two more official healthprofessional member organisations within EULAR. TheEULAR General Assembly held in June 2007 acceptedthe Swedish Rheumatology Forum SveReFo and theNetherlands Health Professionals in Rheumatology asnew member organisations. In this newsletter, you willfind more information on some of our official memberorganisations. Together with the national AHPorganisations, we also intend to share a booth at thenext EULAR congress in Paris 2008. This will allowthem and us to get in a personal contact with theattending AHPs and hopefully stimulate our colleaguesfrom other countries to establish their own nationalorganisation. A further goal of the AHP within the EULAR strategy2012 is to have working groups developing products,such as educational courses, publications, policies,

nder the leadership of the EULAR President,Professor Ferdinand C. Breedveld, EULARis defining its objectives and goals for thenext five years. In early 2007, the EULAR

Executive Committee defined eight overall objectivesfor EULAR to achieve by 2012.The AHP are, as topical subgroup, part of this strategyplanning process. Under the leadership of PeterOesch, a first draft of AHP goals supporting theEULAR overall objectives was defined (see EULARHealth Professionals’ news Vol.8, No 1/2007, p.3).On September 28th and 29th 2007, the EULARstrategy workshop with the aim to review the drafts ofthe 13 subgroups was held in Zurich. The AHP goalswere then well received and will be considered by thestrategy implementation teams reviewing EULAR’s

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Peter Oesch is a memberof EULAR ExecutiveCommittee.

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llied health professionals in rheumatologyhave made significant progress withinEULAR in recent years, both in terms ofmembership as well as programming.

During the relatively short two-year period I havebeen with EULAR, I have seen that the AHPCommittee is a very active body; one that is willing toshape and strengthen the position of allied healthprofessionals in Europe by acting as initiator, enabler,and developer of activities in various fields. At the General Assembly in Barcelona, again two newAHP associations (Netherlands and Sweden) could bewelcomed to the EULAR family. We would like tointerpret this enlargement of the AHP community as afirst step towards a truly pan-European membership.Still, compared to scientific associations and patientorganizations, the allied health professionals have byfar the smallest number of member countries inEULAR. More efforts are needed. We do hope,therefore, that the current momentum will stay andinspire health professionals in other countries toapply for membership. No doubt, this would alsostrengthen the AHP Committee: if it can count onaffiliates from more countries, it will have a betterbase to broaden its activities and include moretalented people in its programmes.

Educational activities are ranking high on the agenda ofthe EULAR Health Professionals. Right now, a majornew project is being prepared: an international post-qualification course aimed at nurses, occupationaltherapists, and physical therapists in Europe. The newlyfounded AHP Scientific Committee is also makingspecial efforts to develop an attractive AHP programmefor the EULAR congress that caters to the diversity ofskills and interests of health professionals in variouscountries. The AHP programme for the 2008 congressin Paris is the largest ever. Rightly so: the fact that thenumber of AHP participants at EULAR congresses hasalmost doubled since 2001 is good evidence that thereis substantial interest in AHP sessions.With these achievements and activities, the healthprofessional community has laid a foundation for aprosperous and meaningful future within EULAR.Strategically, goals and objectives have been set forthe five-year period 2008 to 2012. Special focus is oneducation, recommendations for treatment and thefurther development of the international AHPnetwork. The EULAR community will support you inmaking it happen.

Heinz MarchesiEULAR Executive Director

Which future role shall the AHPCommittee have within EULAR?

EULAR Secretariat staff members from theleft: Education Programme CoordinatorCaroline Pasche, Congress Manager ErnstIsler, Executive Assistant Anja Schönbächler,Finance Coordinator Marie-Louise Huwiler,Executive Director Heinz Marchesi andformer Executive Director Fred Wyss. AlsoProject Coordinator (Social Leagues) FlorianKlett is a member of the staff.

recommendations for care, etc. The AHP EducationalCommittee is well on its way with the development ofthe “teach the teachers course”. The other workinggroup is the AHP Scientific Committee which willmeet for two days in January 2008 in Zurich. The aimof this meeting is to further establish the annualcongress planning and to work out a long term planregarding the AHP congress programme content as

well as to discuss the feasibility of joint researchprojects. The goal is to have AHP research projectsready for presentation to the EULAR ExecutiveCommittee to be considered in its strategy to mobilizethe planet!

Peter OeschAHP Vice President

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6 Newsletter of the Allied Health Professionals in Rheumatology

AHP CLOSE-UP

new milestone in the history of EULAR is the official membership of national healthprofessional organisations in rheumatology.The organisations work closely with the

EULAR Standing Committee of the Allied HealthProfessionals to achieve its aims and objectives.EULAR’s Allied Health Professionals have fournational organisations as members: the British HealthProfessionals in Rheumatology (BHPR), the healthprofessionals in rheumatology Switzerland (hpr), theNetherlands Health Professionals in Rheumatology(NHPR), and the Swedish Rheumatology Forum(SveReFo). In the following, three of these memberorganisations are introduced.

The British AHP organisationBritish Health Professionals in Rheumatology (BHPR)was founded in 1985. The organisation is a charityand represents all health professionals inrheumatology including nurses, occupationaltherapists, physiotherapists, podiatrists, andrheumatologists to name but a few. The primary aimof BHPR is to promote the key role of the multi-disciplinary team in delivering best quality care forpeople with musculoskeletal conditions. It also aimsto support health professionals and allied careworkers in their roles as members of the multi-disciplinary team. BHPR informs, influences andfacilitates health policy and practice to ensure thatthe needs of people with musculoskeletal conditionsare met. Although BHPR is a viable and effectiveorganisation with its own unique identity, it is closelyassociated with the British Society of Rheumatology(BSR). BHPR has eight elected committee membersand a number of associate members representingother organisations such as the CharteredPhysiotherapists Association, Occupational Therapy

Introducing national AHPorganisations

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Association, The Royal College of NursingRheumatology Nursing Forum, and the PodiatryAssociation. At present, BHPR has approximately 550members, all of whom pay a small yearly fee. Theclose relationship with the BSR allows BHPR to sharetheir administrative staff and offices, and they alsoshare a chief executive. BHPR has a representative onall BSR committees and each year, one majorconference is held jointly in the spring. Although theyhave their separate sessions they also have jointsessions and all sessions can be attended by BHPR orBSR members. The two organisations have jointlypublished a number of guidelines including theManagement of Rheumatoid Arthritis (the first 2years) and the Management of Hot Swollen Joints inAdults. In addition to its conferences, the BHPRproduces Newsletters each year, and in 2005launched its website in collaboration with the BSR.This can be found by visiting www.rheumatology.org.uk and then clicking on the BHPR tab on the left-hand side. BHPR also offers a number of prizes andbursaries for its members to attend conferences bothin the UK and abroad. Recently, a number ofapplications have been received from healthprofessionals from Europe and even Hong Kong, andBHPR would welcome even more applicants withopen arms! Information can be found on the website.

AHP a division of Dutch society for rheumatologyTo be better able to reach common objectives, theNetherlands Health Professionals in Rheumatology

In NHPR, there are 220 members in Nursing section, 76 in Physicaltherapy, 27 in Occupational therapy, 10 in Social work and 16members in the Psychosocial Research section.

British Health Professionals aim to promote the role of the multidisciplinary teamwork.

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(NHPR) was established as a new division of the DutchSociety for Rheumatology (DSR). Although within theDSR, a good cooperation existed between therheumatologists and the five health professionalsections, the five sections as well as the rheumatologistsconsidered it desirable to give the health professionals aclearer profile. Since 2005, the NHPR brings togetherhealth professionals from the sections of Nursing,Physical therapy, Occupational Therapy, Social Work,and the interdisciplinary working group calledPsychosocial Research of Rheumatic Diseases. The new division strengthens the cooperation betweenhealth professionals which has been increasing in thepast years.

The main goals of NHPRThe aim of the NHPR is to organize disciplinary andmultidisciplinary activities aimed at the enhancementof prevention and early detection of rheumaticdiseases as well as the enhancement of high qualitytreatment, care, and education of patients withrheumatic diseases. The NHPR will reach this goal byenhancing the knowledge and skills of healthprofessionals, promoting cooperation and exchangeof knowledge within and between health caredisciplines, and managing and disseminatinginformation about research, care, and education. NHPR organizes Educational as well as ScientificMeetings and publishes a newsletter in theNetherlands Journal of Rheumatology. In the future,NHPR plans to start a Educational developmentproject to find out the present educational needs inorder to better formulate of professional andeducational standards and then implement andevaluate these new standards. NHPR will alsodevelop a website for maintaining and disseminatinginformation and strengthen of internationalcooperation of health professionals within EULAR.During the last EULAR congress, the NHPR wasratified as a member of the EULAR by the GeneralAssembly.

The allied health professionals in SwitzerlandThe health professionals in rheumatology switzerland(hpr) founded in September 2004 is a relatively youngassociation of health professionals in rheumatology.Nevertheless in 2006, it became, together with theBritish Health Professionals in Rheumatology (BHPR),the first official AHP member organisation in EULAR.It also cooperates with the Social League Switzerland,the Swiss Society for Rheumatology, and the SwissSociety for Physical Medicine and Rehabilitation.The objectives of the hpr switzerland are to optimizethe treatment and care of rheumatism patients and topromote an interdisciplinary team approach. It isguided in this objective by scientific principles and bythe professional ethics of the professions involved.hpr switzerland fulfils its objective by supportinghealthcare professionals involved in rheumatology. The hpr switzerland organises an annual jointconference with the Swiss Society for Rheumatologyand the Swiss Society for Physical Medicine andRehabilitation. This year’s conference was held in thetown of Interlaken at 30th of August 2007. A jointsession was held in the afternoon on “Molecular andcellular basis of pain – Novel aspects for therapeuticinterventions” followed by an hpr abstract sessionand the award ceremony for the annual poster price.The hpr switzerland were able with the help of thesponsor ABSORIN Switzerland to award 1000 SFr. forthe best poster presented. Winner of the poster prize2007 was Roger Hilfiker and his scientific team withtheir work titled “Improving a home-based balanceexercise programme by means of Rasch analysis“(more on page 13).

The contact information of the national member organisations:www.eular.org/member_health_professionals.cfm

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The beautiful view from Interlaken’s world famous Jungfrau distracted attention just slightly from the interesting hpr congress program dedicated to soft tissue disorders.

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8 Newsletter of the Allied Health Professionals in Rheumatology

Is using a rehabilitation tool mediated by InformationTechnology the answer tomore effective patient careand teamwork?THESIS BY JOHN VERHOEF, LEIDEN UNIVERSITYMEDICAL CENTER, NETHERLANDS

Name of the thesis: Integrated Care for Patient withRheumatoid Arthritis, 2007Objectives: 1. To describe the feasibility of a system of

networks and continuing education for primarycare physical therapists as regards arthritis care.

2. To evaluate the impact of the introduction of a rehabilitation tool (the Rehabilitation ActivitiesProfile; RAP), including a computer application,in multidisciplinary team care in rheumatologywith respect to clinical effectiveness, patientsatisfaction, team members’ satisfaction andmeasurement properties.

3. To develop and apply a measurement instrumentto evaluate the communication duringmultidisciplinary team conferences in an arthritisteam care setting.

Design: Descriptive study (feasibility study regionalnetwork implementation) and pretest posttest design(implementation of the RAP).Setting: Day patient and inpatient wards of arheumatology rehabilitation clinic.Subjects: Patients admitted to both wards andmembers of two multidisciplinary teams.Main measures: Patient-oriented measures offunctional ability, measures of physical and mentalfunctioning, quality of life, disease activity, patientsatisfaction, team functioning, and teamsatisfaction.Read the whole thesis:www.openaccess.leidenuniv.nl/dspace/bitstream/1887/12300/5/fulltext.pdf

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heumatoid arthritis (RA) is an autoimmunedisease affecting approximately about onepercent of the adult population in theWestern countries. Despite advances in

medical treatment, RA requires the services of varioushealth professionals, e.g., rheumatologists, nurses,

physical therapists, occupational therapists, and social workers. Ideally, all physicians and health professionals involved are systematicallycoordinating their activities to maximize thecontinuity and cohesiveness of care. In daily practice,access to comprehensive arthritis care and thecoordination of services are often insufficient.A shortage of specialized health care practitionersand facilities and increasing cost-constraints in healthcare are creating challenges for arthritis care. Manycountries are beginning to develop new models forarthritis care involving information technology,educational interventions, patient-initiated care, andextended roles for health professionals. In the thesis, an arthritis care model concerning asystem of networks and continuing education forphysical therapists in primary care is described (inthis article this will not be further elaborated).Furthermore, the thesis focuses on the evaluation ofthe introduction of a rehabilitation tool, theRehabilitation Activities Profile (RAP), including acomputer application in multidisciplinary team care. The process of communication has an essential rolein effective teamwork. Further research is required asregards the definition and measurement of mutualunderstanding in different situations, as well as therelation between the communication measures(process assessments) and the outcome measures.This thesis presents an elaborated case study, offeringa clear example of an approach into the importanceof fluent communication.

Clinical outcomes versus patient satisfactionand team satisfactionThis thesis contains a study comparing the impact ofthe use of an International Classification ofFunctioning, Disability and Health (ICF)-basedrehabilitation tool (RAP) on clinical effectiveness and patient satisfaction in a rheumatology

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John Verhoef is theChairman of EULARStanding Committee ofthe Allied HealthProfessionals inRheumatology.

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multidisciplinary team care setting. Overall, patientsimproved significantly between admission anddischarge and between admission and six weeks afterdischarge; however, there was no significantdifference between the improvements in the twoperiods. Patient satisfaction was significantly higher inthe period after the introduction of the RAP; however,the absolute difference was small. It was concludedthat in RA patients admitted for multidisciplinary teamcare, the introduction of the RAP did not changeclinical effectiveness but had a modest beneficialimpact on patient satisfaction.With respect to the impact on the health professionalsinvolved, the process of communication, teamfunctioning in general, and the administrativeworkload appeared to be influenced, with conflictingresults for the two multidisciplinary teams involved inthe study. In the day patient setting, the introductionof a rehabilitation tool had a positive effect on teammembers’ satisfaction with team functioning and teamconferences, whereas in the inpatient setting, theeffect was absent or the opposite. The mixture of results pertaining to different outcomemeasures and two different settings (day patient andinpatient) make it difficult to draw a firm conclusionon whether the usage of the rehabilitation tool shouldbe recommended in rheumatology rehabilitationsettings. With respect to its impact on staffsatisfaction, the clear distinction between its impacton team functioning and team satisfaction withconferences in the inpatient and day patient settingindicate that a rehabilitation tool such as the RAP ismore suitable for a "true” rehabilitation setting thanfor an inpatient nursing ward. In that respect, it needsto be borne in mind that economic considerations arealso important to outweigh the advantages anddisadvantages of interventions in health care. Considerations should also include an analysis offactors that may have played a role in the lack ofclinical effectiveness among patients and conflictingexperiences among health professionals. With theRAP it is predominantly focused on the ICF level ofActivities and Participation, however, the spectrum of

problems encountered by patients with RA is broad,and includes a number of aspects on the level of BodyFunctions, Body Structures, Environmental andPersonal Factors as well. Limitations and problems onthe level of Activities and Participation must alwaysbe seen in connection with the other levels of diseaseconsequences, so that the focus of the RAP may betoo narrow. The RAP in its present form may,therefore, be less suitable for the monitoring ofprogress and evaluation at discharge in settings inwhich admissions are brief. All of these reflectionspoint into the direction of consideration of adjustmentof the contents of the RAP according to those areasthat have been previously identified to be relevant bypatients with RA and expert health professionals andto the rehabilitation setting in which it is to be used.In this respect, it could be worthwhile to study thequalities of other rehabilitation tools.

The impact of Information Technology inhealth care In this thesis, we assessed the impact of informationtechnology (IT) by focusing on the way it changedcommunicative behaviour in a well-defined setting.In general, we can say that changing communicativebehaviour is one of the major effects of the usage of IT in an organizational setting. The impact oncommunication can be assessed by taking intoaccount both its efficacy as well as its efficiency. Concerning Te’eni’s observation that the main goal ofcommunication is to achieve mutual understanding, itcould he hypothesized that the level on which this is achieved determines the efficacy of thecommunication. This leaves us with the problem ofdefining and measuring mutual understanding. In thisthesis, we have based our judgment on the efficacy ofthe team conference communication on the prepositionthat mutual understanding is achieved when teammembers are able to agree on common treatment goals.The analysis of the communication duringmultidisciplinary team conferences demonstrated thatin the rheumatology setting, the introduction of arehabilitation tool with accompanying IT application

facilitated the process of mutualagreement on treatment goals. Efficiency of communication boilsdown to the effort and time it takesto reach mutual understanding. In this thesis, we have assumedthat a team conference – a face-to-face meeting that consumesconsiderable time from the healthprofessionals – should he usedprimarily for discussing andnegotiating common team goals.All other communication activities,such as informing each other aboutthe patient's health status, shouldbe as limited as possible. Thisimplies that other means must hesought for exchanging informationon the patient. In our case, we

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10 Newsletter of the Allied Health Professionals in Rheumatology

AHP COLLABORATION

PARE (EULAR standing committee of people witharthritis/rheumatism in Europe) has started an importantrestructuring process. One of the purposes of thisprocess is to create better conditions for a closercollaboration with other parties of EULAR. PARE isconvinced that new partnerships are necessary forestablishing patient centred health care services that enable people with arthritis to lead full andindependent lifes.One way of doing this is by increasing theincorporation of the patient perspective in all areas oflife affecting people with artritis. Research, patientadvocacy, the development of recommendations forthe treatment of rheumatic diseases as well as arthritishealth care provision are better and more relevantwhen people with direct experience with living withthe disease are involved.As the vice-president of EULAR PARE, I appreciate thedialogue with the AHP. It is of utmost importance tointensify our collaboration. Organising the so-calledJoint sessions at the EULAR congress is a first exampleof the benefits of working together. There is a commonbody of scientific and personal knowledge that needsto be shared. By exchanging best practices, patientrepresentatives as well as health professionals can learnfrom each other. Because health professionals oftenhave a closer and more intensive contact with peoplewith arthritis than clinicians or researchers, this directcommunication is most valuable. We hope that ourcollaboration on a European level will have a spin offin our respective member countries. Patient educationand awareness campaigns like World Arthritis Day are

areas in which we would like to cooperate with healthprofessionals.There are other joint interests: When it comes, forinstance, to research of non-pharmalogicalinterventions like physiotherapy, life stylerecommendations, self management or the use ofaids, it is difficult to acquire sufficient sponsors.Joining forces can help to obtain funding for projectsthat are highly relevant for patients and healthprofessionals. Patients are starting to contribute to thedevelopment of such a research agenda, e.g., duringOMERACT, or the CARE-conferences. There is noreason why their involvement should be limited to thephase of identifying research priorities. Theirinvolvement could be furthered also beyond research.In the Netherlands, we have started to collaborate withhealth professionals in a number of interesting projects.For this purpose, a network of well-selected patientrepresentatives receives training on how to present thepatient perspective and on how to contributeconstructively to a project. On an international level,we hope to develop a similar network of competentpatient representatives that are willing and able toparticipate actively in international studies, workinggroups, or advocacy work. In short, there are plenty of challenges for collaborationbetween health professionals and PARE. We hope thefuture will bring promising opportunities to worktogether more often.

Maarten de WitEULAR Vice President PARE

Promising future for collaboration

made this exchange asynchronous, by mediating it by using an IT-application. This enabled healthprofessionals to assess and register the information at atime and place that would best suit them. Indeed, forthe initial team conferences, the proportion of timespent on grounding decreased significantly. Groundingcan be defined as achieving a shared view of the currenthealth status of the patient, such as a description of theseverity and extent of disease activity and the presenceof comorbidities. This thesis demonstrated thatespecially for the initial team conferences in which,

before the introduction of the RAP and accompanyingIT application consigned for a considerable part ofinformation exchange, transference of the process ofinformation exchange was indeed accomplished. In ourview, outcome measures, such as patient satisfaction orimprovement of health status or health professionals’judgments of team functioning and team conferences,are indirect measures for the impact of IT. This impactmust also be assessed in terms of both the efficacy andefficiency of the communication processes it affects.

PARE

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or ten days inSeptember2007, I had theopportunity to

visit the department ofrheumatology at LeidenUniversity MedicalCenter (LUMC). I workas a researcher at

Spenshult Hospital for Rheumatic Diseases inHalmstad located in the south-west of Sweden, and atthe Southern Sweden Musculoskeletal ResearchCenter at Lund University Hospital. My main focus inresearch is on patient centred outcomes after teamcare rehabilitation and after surgery. SpenshultHospital provides both team care and surgery. Theaim of my visit to Leiden was to learn more of teamcare research and to visit Dr Vliet Vlieland and herco-workers, Dr Vliet Vlieland being a well knownperson in team care research worldwide.

People on wheelsWhen I first arrived in Leiden, I was almost run overby all the fast biking people. I read in my guidebookthat 60,000 people pass through the central station inLeiden every week and almost every one of them hasgot to have a bike outside! I thought the Swedes werebiking people – but not compared to the people livingin Leiden. Well, after a day or two, I learned to lookfor bikes instead of being concerned about cars, it justtook some practice. I stayed at the InternationalHouse on the Raapenburg situated on what issupposed to be “the most beautiful canal in theworld”. I totally agree.My visit was arranged by Dr Vliet Vlieland who put alot of effort into my program. I got to meet with mostof the researchers at the department and learned oftheir studies. But I also met with members from theday care team and physical therapists working in theRheumatological and Orthopaedic departments,which was of a special interest to me since I myselfhave worked as a physical therapist for more than 20years, 10 of them at a rheumatology department. Iwas impressed by the education provided for physicaltherapists in primary care to be updated on

Rheumatological treatment. Many of the patients inthe Netherlands, as well as in Sweden, will see aphysical therapist working in primary care and notalways a specialist in the hospital. At LUMC, physicaltherapists working in primary care have the possibilityto attend an ongoing education provided byspecialists which has been much appreciated. I wasalso impressed by the way medical students have apossibility to choose the physical therapy departmentfor education. I will bring these and several moreideas back to Sweden and to the environment I workin.

Team care interventions I learned more about team care research, problems,and unstudied areas. I was encouraged to go on withthe research I am involved in. In Sweden, severalrheumatology departments are collecting data for acommon register in order to learn more of team careoutcome. The major research question is to findpredictors for a favourable outcome of team care.While doing this, we will have to study the structure,the process, and the outcome of team careinterventions. This means a lot of questionnaires forthe patients to fill out at admission, discharge, andfollow-ups. I also met with John Verhoef whodefended his thesis “Integrated Care for Patients with Rheumatoid Arthritis” only a few days before my arrival in Leiden. His thesis is an importantcontribution to team care research. I met several teammembers who all appreciated the RehabilitationActivities Profile (RAP) discussed in Verhoef’s thesis.I would like to thank all the people I met at LUMC formaking my educational visit so interesting, Dr VlietVlieland in particular and also Professor Hiziega forinviting me. Hopefully, there will be somecollaboration with LUMC in the future. I would alsolike to thank the EULAR Standing Committee ofHealth Professionals for allocating the grant for myeducational visit.

Ann Bremander, PT PhDCertified Specialist in Physiotherapy in RheumatologyR&D Center, Spenshult Hospital for rheumaticDiseases Oskarström, Sweden

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EDUCATIONAL VISIT

At Leiden University MedicalCenter, the Netherlands

The goal of the CARE organisation is to improve the quality of care inarthritis by

● Providing a forum for international collaboration and supportfor patient representatives, seasoned and novice researchersand all stakeholders in the arthritis community

● Developing and evaluating models of care● Initiating international studies on specific issues

The fifth CARE conference will be held in Oslo, Norway 23-25 April2008.

Allied Health Professionals are welcome to submit abstracts related tothe above mentioned topics. Abstract submitters may also apply for aCARE travel grant. A total of 35 travel grants of 500 euro will beassigned to participants with approved abstracts.

For more information see www.rheumacare.org

Call for abstracts to the CARE V conference 2008

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12 Newsletter of the Allied Health Professionals in Rheumatology

IN AHP FOCUS

A solution to reduce the burden of osteoarthritis

ince 2005, the Swedish RheumatismAssociation and ten other partners havecarried out the Osteoarthritis Communicator(OAC) project with the support of the

Leonardo da Vinci programme. The OAC project isworking to reduce the burden of osteoarthritis, and itbrings together complementary and overlappingcompetence and experience from physiotherapists,patients and other professional educators to produceinnovative methods and new educational material toincrease the knowledge on how to take care ofosteoarthritis and to find alternative treatments inmedical care.The project ended officially in September 2007 but theco-operation with education and medical care bodieswill continue. According to the project co-ordinatorRolf Greiff, the programme has been well receivedacross Europe.– The programme has trained 44 osteoarthritis patientsto become Osteoarthritis Communicators in Sweden,Germany, Latvia, Lithuania, and United Kingdom.These uniquely qualified OA Communicators willcarry out sessions for physiotherapy students duringtheir training or for physiotherapists during theircontinuing professional development. We are indiscussion with new partners in Denmark and Hollandabout introducing OACs in their countries, Greiff says.The collaboration partners have presented the projectto initial target groups in Europe, participated oninternational conferences, and lobbied healthauthorities in different countries.– We have introduced the programme tophysiotherapy training centres and to RheumatismAssociations in Europe. Our dissemination activitiesfocused on 500 key persons within Europeanprofessional training for physiotherapists, 30 central

figures within European organizations’ for rheumaticsand 20 decision makers within the European Bone andJoint Health Strategies Project. At the moment ourNewsletter has 527 recipients, Greiff proudly reportsof the well-planned information strategy.In the future, the OA Communicators will work closertogether with the whole health care sector. This bringsthe programme into new educational settings, forexample, into medical centres, in which the trainingor continuing professional development of doctors,nurses, physiotherapists, or occupational therapistscan take place.– We have a recruitment programme for OACommunicators and their trainers. If you haveosteoarthritis and would like to become anOsteoarthritis Communicator, please contact thecoordinator or a partner in your country, Greiff advices.

Trained to train othersThe Osteoarthritis Communicators have been trainedby expert physiotherapists and other healthprofessionals who themselves were trained at a pilotcourse in Vilnius, Lithuania in 2006. The educationwill give an update on Osteoarthritis and considers itscauses, symptoms, burden, assessment and diagnosis,risk factors and evidence-based management.– This programme enables those with osteoarthritis to feelthat they are giving something back despite the problemsthey have from their condition, says Birgit Rösblad, theDirector of Research and Development at SwedishAssociation of Registered Physiotherapists (LSR).She is very optimistic about the impact of theprogramme since the first OA Communicators are noweducated and study materials have been produced. – This will most certainly improve the quality of theeducation of physiotherapists. Physiotherapists now have the opportunity to beeducated by people living with osteoarthritis. This willdeepen the knowledge and understanding of thedisorder, says Rösblad.The Registered Physiotherapists (LSR) has worked topromote the Osteoarthritis Communicator programmein the national level.– All activities performed by LSR have been aimedtowards spreading information about the project. InSweden, we have been able to reach more or less allphysiotherapists.Our magazine, Physiotherapy, published an articleabout the project in November 2005. Our magazine isdistributed to approximately 11,000 physiotherapists,which represents some 85 per cent of allphysiotherapists. Our members have also retrieved moreinformation on our homepage on several occasions, andthrough newsletters distributed in email, tells Rösblad.Information has also been disseminated to

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representatives from all eight physiotherapy educationdepartments in Sweden. Moreover, keeping thephysiotherapy school informed has been consideredas an important activity since the OA communicatorsessions should be an integral part of the education. – It is crucial that physiotherapists manage the disorderand continue their professional development. TheOsteoarthritis Communicators programme is goodway to do that, says Rösblad.

Read more about the project on the Internet:

www.reumatikerforbundet.org/start.asp?sida=6280 Each partner will continue to promote and run OACtraining at home. New partners are welcome to use theOAC training programme.All material is available as PDF on the Internet. There is a Manual for Osteoarthritis Communicator, a Manual for training the OA Communicators, and a Manual for training OACs trainers.

What can the patient do?

● Formulate treatment goals● Find pleasant activities ● Exercise regularly ● Train with “acceptable pain”● Evaluate symptoms, function, and activity level

What can health professional do?

● Give individual recommendations about weightloss, exercise, use of painkillers

● Consider the patient’s preferences, goals, andfears

● Give advise about self-exercise● Motivate to compliance● Give feedback through evaluation of symptoms,

function, and level of physical activity

Dialogue between the health professionals and patients:

Strength, balance and agility contribute to thereduction of falls. Patients can improve these featureswith a home-based exercise programme butadherence to such programmes is low. If the difficultyof exercise does not match the capacity of theexercising patient and the difficulty does not increasewith the improving patient, he or she will probablynot adhere to the programme. A sound progression ofhome based exercises might improve adherence andeffectiveness. Rasch analysis puts the ability of thepatients and difficulty of the exercises on the samemetric continuum and provides information ondifficulty levels and targeting of the exercises.Therefore, we wanted to use Rasch analysis inevaluating the progression of an existing home basedtest, exercise programme for the prevention of falls.

In the study, 29 healthy persons and 34 patients withmusculoskeletal problems performed the balancerelated exercises and rated the difficulty level of eachexercise. In our cross-sectional study, we performed aRasch analysis to evaluate the targeting of the tests,exercises, and the progression of the difficulty level.

Results and conclusionThe Rasch analysis revealed that the order of theexercises had to be changed. Furthermore, there was a lack of difficult exercises. The test and exerciseprogramme has now been changed and will be submitted to a new set of patients withmusculoskeletal problems. The main limitation wasthe low sample size. This analysis detected a suboptimal progression of thedifficulty levels of the tests & exercises as well as alack of difficult exercises. The order of the exercisescan be improved, based on the information from theanalysis but more difficult exercises should bedevised by gait and balance experts.

Improving a home-based balance exerciseprogramme by means of Rasch analysis

THE HPR SWITZERLAND’S POSTER AWARD WINNER

The scientific team members:Roger Hilfiker, HES-SO, FachhochschuleWestschweiz/Wallis, & Schweizer ParaplegikerForschung, NottwilMarielle Tschopp, Rehazentrum LeukerbadAndré Pirlet, Rehazentrum Leukerbad

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14 Newsletter of the Allied Health Professionals in Rheumatology

EVENTS & NEWS

Since 2003, EULAR has awarded research grants forHealth Professional research projects in the field ofrheumatology. Despite an increased effort to advertisethe AHP research grant, for two successive yearsEULAR has received only 2 applications per grant. A survey among AHP researchers revealed thatdistributing this grant over three successive years is amajor disadvantage, which prevents them fromapplying for it. It was, therefore, decided by themembers of the EULAR Executive Committee duringtheir meeting in October 2007, to offer an annualgrant for an AHP research project of maximal 30,000without setting a time limit. Grant application forms

are available at the EULAR website (www.eular.ch).

AHP travel bursariesEULAR offers again travel bursaries for AHPspresenting their work in the congress. These travelbursaries will only be granted for the first author of anaccepted oral or poster presentation. The applicationcan be sent before a decision on acceptance of theabstract is made, as long as the reference number isgiven. The application forms are available at theEULAR website (www.eular.ch). The decision on theapproval of the request will not be communicateduntil spring 2008.

AHP grant and bursaries in 2008

Paris will see the largest AHP programme ever, starting onWednesday afternoon and ending at Saturday afternoon withthe AHP highlight session. The programme includes a totalof 13 sessions involving EULAR Allied Health Professionals.Four of these are joint sessions with the rheumatologists aswell as PARE (People with Arthritis/Rheumatism in EULAR)and nine AHP sessions. There will be oral presentations ofsubmitted abstracts during the invited speakers’ sessions.However, there is a new session for purely AHP abstracts inorder not to disadvantage abstracts not in line with theplanned topics of the invited speakers’ sessions. Therefore,this abstract session will be a mix of different topics and willgive an excellent overview of the research work done byallied health professionals.

The AHP programme at the EULAR Congress2008 in Paris

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Educational Visits 2008

EULAR awards up to 10 bursaries for educational visitsto Allied Health Professionals other than physiciansworking in the field of rheumatology to enable him/herto carryout an educational visit to colleagues inanother EULAR member country.The amount of each of the bursaries is between € 750and 1500. The annual total amount granted is € 7500.The objective is to improve the standard of researchand care and to foster collaboration across clinicalunits in Europe. The deadline for applications is 31 March 2008. Applications should be submitted bye-mail to the EULAR Secretariat at [email protected].

Applications should include a CV with date of birth,objectives of the educational visit, a budget, a writtenconfirmation from the host hospital or institute, andthe tentative time frame of the training stay. Theapplication form and the contract to be signed withterms and conditions is available on: www.eular.org/myUploadData/files/AHP_EducationalVisitContract.pdf

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

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Practice and Clinical CareA1 NursingA2 Psychology / Social sciencesA3 PhysiotherapyA4 Occupational therapyA5 Miscellaneous forms of clinical care

Health professional research work

CLINICAL TOPICS BY DISEASE 07. RA – epidemiology, prognosis and predictors08. RA – other clinical aspects and comorbidity09. RA – anti-TNF therapy10. RA – other biologic treatment11. RA – non-biologic treatment12. SLE, Sjögren’s and APS – clinical aspects and treatment13. Vasculitis14. Scleroderma, Myositis and related syndromes

Topics of the Allied Health Professional abstracts15. Spondylarthropathies16. Psoriatic Arthritis17. Osteoarthritis- clinical aspects and treatment.18. Osteoporosis19. Bone diseases other than osteoporosis, metabolic diseases and crystal diseases20. Infection-related rheumatic diseases21. Fibromyalgia22. Back pain, mechanical musculoskeletal problems, local soft tissue disorders23. Management of pain in rheumatic diseases24. Paediatric rheumatology25. Miscellaneous rheumatic diseases

CLINICAL TOPICS BY AREA OF RESEARCH 26. Diagnostics and imaging procedures27. Health service and outcome research28. Rehabilitation29. Education

The abstract submission process is open until the 31st

of January 2008. Allied Health Professionals canchoose to submit abstracts either for practice andclinical care or for Health Professional research work. There have been uncertainties among the AHPresearch community whether abstracts should besubmitted to the scientific topics or to the AlliedHealth Professionals. The AHP researches can restassured that after being submitted as an Allied HealthProfessional they still can choose all the scientifictopics as before. Their abstracts will be reviewed byscientific reviewers and will be selected for oralpresentation in a scientific session if they achieve ahigh score. AHP researchers are still able to displaytheir poster in the associated scientific research topic.The reason to indicate researcher’s submission as anAHP is that the AHP Scientific Committee can choose

from all AHP abstracts for oral presentation during theAHP programme. This way it also is easy to count theAHP abstracts submitted to the congress. Thanks to the new abstract submission process, thenumbers of AHP abstracts have gone up from 75 inVienna 2005 to 181 in Barcelona 2007. This is notbecause there were more AHP abstracts submitted butbecause the actual figure can be accuratelycalculated. This figure adds credit to the Allied HealthProfessionals. Allied Health Professional submittingan abstract related to their practice in clinical care arestrongly advised to submit into abstract topics A1 toA5. These abstracts are not in competition with thescientific abstracts. High scoring abstracts can beselected for oral presentation during AHP sessions orwill be displayed as posters in the AHP postersessions.

Abstract submission for Paris Congress11–14 June 2008

The AHP preliminary programme 2008 in Paris

Session type Session titleAHP invited speakers session Tailored cognitive-behaviour therapy and exercise therapy for patients with

fibromyalgia: Innovative approaches and future directionsOvercoming work limitation and joint painThe Foot in Rheumatoid ArthritisMultidisciplinary care and research demonstrated by Systemic SclerosisPromoting exercise and physical activity in patients with rheumatic diseases:How to begin?

AHP Abstract session AHP abstract sessionAHP Meet the Standing Committee The AHP teach the teacher courseAHP Highlight session Highlights of the Allied Health Professional sessions Paris 2008AHP Workshop Writing for Publication including how to carry out literature search, write an

abstract & write for publicationJoint Session What and how to Measure Quality of Life - A Team Perspective?

Innovative models of delivering carePregnancy and rheumatic diseasesPatient partnership, could we do better?

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eular

H E A L T H P R O F E S S I O N A L S

MEMBERS OF THE EULAR STANDING COMMITTEE FOR HEALTH PROFESSIONALS 2007

John Verhoef, [email protected], Chair 2007-2009, PT, THE NETHERLANDS

Peter Oesch, [email protected], Vice President 2005-2009, PT, MSc, SWITZERLAND

Jaana Hirvonen, [email protected], Newsletter Editor, Psychologist, FINLAND

Jill Lloyd, [email protected], ILAR representative, PT, UK

Elzbieta Bobiatynska, [email protected], Sociologist, POLAND

Ute Donhauser-Gruber, [email protected], PT, GERMANY

Urs Gamper, [email protected], PT, SWITZERLAND

Alison Hammond, [email protected], OT, PhD, UK

Jackie Hill, [email protected], Nurse, PhD, UK

Barbka Huzjan, [email protected], OT, SLOVENIA

Katarína Jedlickova, [email protected], Nurse, SLOVAKIA

Ingvild Kjeken, [email protected], OT, PhD, NORWAY

Jana Korandova, [email protected], Nurse, CZECH REPUBLIC

Katti Körve, [email protected], Nurse, ESTONIA

Lene Mandrup Thomsen, [email protected], PT, DENMARK

Ruta Sargautyte, [email protected], Psychologist, LITHUENIA

Tanja Stamm, [email protected], OT, PhD, AUSTRIA

Ingegerd Wikström, [email protected], OT, PhD, SWEDEN