Team rehabilitation and health care utilization in chronic ...lup.lub.lu.se/search/ws/files/3721355/3021652.pdf · Team rehabilitation and health care utilization in chronic inflammatory

LUND UNIVERSITY

PO Box 117221 00 Lund+46 46-222 00 00

Team rehabilitation and health care utilization in chronic inflammatory arthritis patients

Hagel, Sofia

2012

Link to publication

Citation for published version (APA):Hagel, S. (2012). Team rehabilitation and health care utilization in chronic inflammatory arthritis patients. Sectionfor Rheumatology, Department of Clinical Sciences, Lund.

General rightsCopyright and moral rights for the publications made accessible in the public portal are retained by the authorsand/or other copyright owners and it is a condition of accessing publications that users recognise and abide by thelegal requirements associated with these rights.

• Users may download and print one copy of any publication from the public portal for the purpose of private studyor research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portalTake down policyIf you believe that this document breaches copyright please contact us providing details, and we will removeaccess to the work immediately and investigate your claim.

Download date: 03. Feb. 2020

https://portal.research.lu.se/portal/en/publications/team-rehabilitation-and-health-care-utilization-in-chronic-inflammatory-arthritis-patients(18fd623a-ff64-48f2-b932-9c204d288d40).html

Lars Erik Kristensen 1

Från Institutionen för kliniska vetenskaper, Lund

Avdelningen för Reumatologi, Lunds Universitet, Lund

Team rehabilitation and health care utilizationin chronic inflammatory arthritis patients

Av

Sofia Hagel

Legitimerad sjukgymnast

Akademisk avhandling

Som med vederbörligt tillstånd av Medicinska fakulteten vid Lunds Universitet för avläggande av

doktorsexamen i medicinsk vetenskap kommer att offentligen försvaras i

Belfragesalen, BMC, Hus D, 15e våningen, Klinikgatan 32, Lund,

fredagen den 14 september 2012, kl 09.00

Fakultetsopponent

Professor Christina Opava, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Sektionen

för Sjukgymnastik, Karolinska Institutet, Huddinge

Huvudhandledare

Professor Ingemar Petersson, Institutionen för kliniska vetenskaper, Lund, avdelningen för

reumatologi samt avdelningen för ortopedi, Lunds Universitet, Lund

Biträdande handledare

Dr med vet Ann Bremander, Institutionen för kliniska vetenskaper, Lund, avdelningen för ortopedi,

Lunds Universitet, Lund

Med dr Elisabet Lindqvist, Institutionen för kliniska vetenskaper, Lund, avdelningen för

reumatologi, Lunds Universitet, Lund

116

Lars Erik Kristensen 3

Team rehabilitation and health care utilizationin chronic inflammatory arthritis patients

Sofia Hagel

Clinical Sciences, LundSection for Rheumatology

2012

4 Anti-TNF treatment of chronic arthritis in clinical practice

Contact address

Sofia HagelEpi-centrum SkåneSkånes universitetssjukhusKlinikgatan 22221 85 LundSwedenE-mail: [email protected]

Cover page illustration painted by one group of patients when leaving the Rheuma Rehab.

ISSN 1652-8220ISBN 978-91-87189-22-7Lund University, Faculty of Medicine Doctoral Dissertation Series 2012:59

Printed by Media-Tryck, Lund University, 2012

Sofia Hagel 1

Contents

Abstract 2List of papers 3Aims of this thesis 4Thesis at a glance 5Description of contributions 6Abbreviations and definitions 7Introduction 8Background 9Health 9The international classification of functioning, disability and health (ICF) 9Rehabilitation 10Chronic inflammatory arthritis 10History of rheumatological care 12Rheumatological rehabilitation teams 13Evaluation of modern rheumtological team rehabilitation 16The patient’s perspective 19Methods - Data sources 21The STAR-ETIC project 21The Skåne health care register 24Methods - Patients 26Methods - Outcome measures 28Outcome measures used for evaluation 28Psychometric properties 29Health care utilization 30Statistics 31Ethics 31Results 32Health related quality of life 32Other aspects of health 32Physical functioning - patient reported 33Physical functioning - observed 33Health care utilization 35General discussion 36Theoretical frameworks for this thesis 36Team rehabilitation 36Health related quality of life 38Physical functioning 38Aerobic capacity 38Psychometrics in the evaluation of team rehabilitation 39Limitations of the present studies 39Clinical implications 40Future perspectives 41Conclusions 42Summary in Swedish 43Acknowledgements 46References 48Papers I-IV 61

2 Team rehabilitation and health care utilization in chronic inflammatory arthritis

Abstract

The aim of this thesis was to study outcomeand evaluation of rheumatologicalmultidisciplinary team rehabilitationprogrammes in patients with chronicinflammatory arthritis (CIA); rheumatoidarthritis (RA), ankylosing spondylitis,psoriatic arthritis and otherspondyloarthritides, and to analyse health careutilization over the last decade in patients withRA.

In Study I the outcome of an 18 daysoutpatient multidisciplinary team rehabilitionprogramme in 174 patients with CIA wasanalysed. The patients were evaluated pre- andpost the rehabilitation programme and 4 and 12months thereafter. Health related quality of life(HRQoL), general health and aerobic capacitywas significantly improved at the end of therehabilitation programme and after 12 months.

In Study II 731 patients with CIA participatedin different team rehabilitation programmes infour European countries and were evaluatedpre- and post rehabilitation. Through analysisof covariance we studied which patientsimproved the most by team rehabilitation.Females experiencing more pain, fatigue andlower psychosocial wellbeing improved mostin HRQoL. HRQoL for half of the patientsimproved according to analysis of MinimalImportant Difference.

In Study III we analysed the validity andresponsiveness of 15 standardized outcomemeasures used to evaluate outcomes frommultidisciplinary team rehabilitation in 216patients with CIA. According to our linking ofthe outcome measures to the InternationalClassification of Functioning, Disability andHealth (ICF) most ICF components werereasonably well covered except environmentalaspects. Further, out of three outcomemeasures used to evaluate HRQoL, theEuroqol-5Dimensions (EQ-5D) performed as

well as the more extensive short form 36 healthsurvey (SF-36) and Nottingham health profile(NHP). Aerobic capacity did not correlate toother measures of observed physicalfunctioning. It was highly responsive tochange.

In Study IV we wanted to study health careutilization in patients with RA over time. Byusing the Skåne Health Care Register weidentified 3977 persons who had beendiagnosed with RA when consulting healthcare during 1998-2001. Two referents from thegeneral population per RA patient werematched for age, sex, and area of residence.The annual mean number of hospitalizationsand outpatient clinic visits 2001-2010 and theannual ratio (RA cohort/referents) wereanalysed.

The overall inpatient and outpatient healthcare utilization was found to decrease in RApatients as compared to the generalpopulation.

To conclude, multidisciplinary teamrehabilitation is beneficial for patients with CIAwith regards to HRQoL, general health andaerobic capacity both short and long term.Further, patients with more severe diseaseconsequences benefit most fromrheumatological team rehabilitation.

When evaluating HRQoL in rheumatologicalteam rehabilitation the commonly usedquestionnaires EQ-5D, NHP and SF-36,showed important differences in constructvalidity and responsiveness and are thus notinterchangeable.

Improving aerobic capacity is an importantaspect of team rehabilitation not covered byother outcome measures on physical functionand thus important to evaluate.

Patients with RA have utilized less healthcare during the last decade which might be aneffect of changing treatment strategies.

Sofia Hagel 3

List of papers

This thesis is based on the following papers,which will be referred to in the text by theirRoman numerals (I - IV)

I Team-based rehabilitation improveslong-term aerobic capacity and health-relatedquality of life in patients with chronicinflammatory arthritis.Hagel S, Lindqvist E, Bremander A, PeterssonIFDisability and Rehabilitation 2010;32(20):1686-1696.

II Which patients improve the most fromarthritis rehabilitation? Results from patientswith inflammatory arthritis in northern Europe,the STAR-ETIC collaboration.Hagel S, Lindqvist E, Petersson IF, MeestersJJL, Klokkerud M, Aanerud GJ, Stovgaard IH,Hørslev-Petersen K, Strömbeck B, VlietVlieland TPM, Bremander A, and the STAR-ETIC groupSubmitted

III Validation of outcome measurementinstruments used in a multidisciplinaryrehabilitation intervention for patients withchronic inflammatory arthritis: Linking to theInternational Classification of Functioning,Disability and Health, construct validity andresponsiveness to change.Hagel S, Lindqvist E, Petersson IF, Nilsson JÅ,Bremander AJ Rehabil Med 2011;43:411-419

IV Trends in 21st century health careutilization in a rheumatoid arthritis cohortcompared to the general population.Hagel S, Petersson IF, Bremander A, LindqvistE, Bergknut C, Englund MSubmitted

Published articles are reprinted withpermission from the publishers.

The studies presented were supported by theRegion Skåne and the Faculty of Medicine,Lund University, Lund University HospitalFunds, the Osterlund Foundation, the SwedishRheumatism Foundation, the SwedishResearch Council, , the Norrbacka-EugeniaFoundation, the Maggie Stephens Foundationand Capio’s Research Foundation, Sweden.

The European League Against Rheumatism(EULAR) has financially supported the STAR-ETIC by EULAR grant CLI022.


Aims of this thesis

The overall aim of the studies presented in thisthesis was to determine whether patients withCIA benefit from team rehabilitation. A furtheraim was to develop and use appropriatemethods of evaluating team rehabilitation, andto establish whether health care utilization hadchanged among patients with RA over the pastdecade.

This thesis is based on four studies on:

• the long-term clinical outcome of acomprehensive 18-day multidisciplinaryrehabilitation programme in patients withrheumatoid arthritis, ankylosing spondylitis,psoriatic arthritis and other spondylo-arthritides,

• the outcome of arthritis rehabilitationprogrammes for patients with CIA fromselected centres in four European countriesfocusing on factors predicting change inHRQoL, and the estimation of the proportion ofpatients achieving clinically relevantimprovement,

• how well established outcomemeasures used for the evaluation of teamrehabilitation cover the ICF domains, and toevaluate the construct validity andresponsiveness of the instruments to change,

• health care utilization over time (2001-2010) in a population-based RA cohort and areference cohort.

Sofia Hagel 5

Thesis at a glance

Study IThis was an observational, prospective studyon the outcome of an 18-day teamrehabilitation programme (day care) in patientswith chronic inflammatory arthritis (CIA). The174 patients were evaluated at the beginning,at the end, and at 4 and 12 months after therehabilitation programme. Health-relatedquality of life (HRQoL), general health andaerobic capacity improved significantly as aresult of rehabilitation, and remainedsignificantly improved at follow-up after 12months.

Study IIThe second study was an international,observational, prospective multi-centre study(STAR-ETIC) on team rehabilitation outcome.Data were obtained from 731 patients with CIAat the beginning and end of rehabilitationprogrammes in four European countries. In ananalysis of covariance we identified potentialbaseline predictors of rehabilitation inducedimprovement in HRQoL. Female patientsstruggling with more pain, fatigue and lowerpsychosocial wellbeing were found to benefitmost from the rehabilitation programmes. TheHRQoL of half of the patients improved usingthe concept of Minimal Important Difference(MID).

Study IIIThe third study was a methodological analysisof the validity and responsiveness of 15

standardized outcome measures used toevaluate rehabilitation outcome in 216 patientswith CIA. The outcome measures were foundto cover the components body function,activity and participation of the InternationalClassification of Functioning, Disability andHealth (ICF) well, but not the environmentalaspects. Further analysis of validity andresponsiveness showed that outcomemeasures evaluating HRQoL did not evaluatesimilar aspect of disease. The EQ-5D, a briefHRQoL outcome measure, performed as well asother more extensive HRQoL outcomemeasures (SF-36 and NHP). Aerobic capacitydid not correlate to other measures of observedphysical functioning. Further, aerobic capacitywas highly responsive to change.

Study IVThe final study was based on data from theSkåne Health Care Register regarding theutilization of health care in the period 2001-2010. Closed cohorts of rheumatoid arthritis(RA) cases (n=3977) and reference subjects(n=7954) were identified. Annual meanhospitalizations per patient and annual meanoutpatient health care visits per patient tendedto decrease in the RA cohort over the studyperiod, while it was fairly stable in the referencecohort. A decrease in the health care utilizationfor physicians and physiotherapist was seen,but the utilization of other health careprofessionals did not significantly changeover time.


Paper IStudy design: Sofia Hagel

Ann BremanderElisabet LindqvistIngemar Petersson

Data collection: Sofia HagelElisabet Lindqvist

Data analysis: Sofia HagelAnn BremanderElisabet LindqvistIngemar Petersson

Manuscript writing: Sofia HagelManuscript revision: Ann Bremander

Elisabet LindqvistIngemar Petersson

Paper IIStudy design: Sofia Hagel

Ann BremanderKim Hørslev-PetersenMari KlokkerudElisabet LindqvistJorit MeestersIngemar PeterssonInger HenrietteStovgaardBritta StrombeckThea Vliet Vlieland

Data collection: Sofia HagelAnn BremanderKim Hørslev-PetersenMari KlokkerudElisabet LindqvistJorit MeestersIngemar PeterssonInger HenrietteStovgaardBritta StrömbeckThea Vliet Vlieland

Data analysis: Sofia HagelAnn BremanderElisabet LindqvistIngemar Petersson

Manuscript writing: Sofia HagelManuscript revision: Gerd Jenny Aanerud

Ann BremanderKim Hørslev-PetersenMari KlokkerudElisabet LindqvistJorit MeestersIngemar PeterssonInger HenrietteStovgaardBritta StrömbeckThea Vliet Vlieland

Paper IIIStudy design: Sofia Hagel

Ann BremanderElisabet LindqvistJan-Åke NilssonIngemar Petersson

Data collection: Sofia HagelElisabet Lindqvist

Data analysis: Sofia HagelAnn Bremander


Elisabet LindqvistJan-Åke NilssonIngemar Petersson

Paper IVStudy design: Sofia Hagel

Ann BremanderMartin EnglundElisabet LindqvistIngemar Petersson

Data collection: Charlotte BergknutMartin EnglundIngemar Petersson

Data analysis: Sofia HagelMartin EnglundIngemar Petersson


Charlotte BergknutMartin EnglundElisabet LindqvistIngemar Petersson

Description of Contributions

Sofia Hagel 7

AS ankylosing spondylitisASAS Assessment of Ankylosing

Spondylitis InternationalSociety

ASES arthritis self-efficacy scaleBASDAI Bath ankylosing spondylitis

disease activity indexBASFI Bath ankylosing spondylitis

functional indexBAS-G1/G2 Bath ankylosing spondylitis

general health over the last week(G1), over the last six months(G2)

BASMI Bath ankylosing spondylitismetrology index

CI confidence intervalCIA chronic inflammatory arthritisCRP C-reactive proteinCVD cardiovascular diseaseDAS28 disease activity score based on

28-joint countDMARD disease-modifying anti-

rheumatic drugESR erythrocyte sedimentation rateEQ-5D euroqol-5dimensionsEULAR European League Against

RheumatismGRAPPA Group for Research and

Assessment of Psoriasis andPsoriatic Arthritis

ICD International Classification ofDiseases

ICF International Classification ofFunctioning, Disability andHealth

HAQ health assessmentquestionnaire

HLA-B27 human leucocyte antigen, alleletype B27

HRQoL health-related quality of lifeHSCL-25 Hopkins symptom checklist 25

questionsIQR interquartile rangeMCID minimally clinically important

differenceMID minimal important differenceNHP Nottingham health profileNRS numeric rating scaleOMERACT Outcome Measures in

RheumatologyOT occupational therapistPA peripheral arthritisPRO patient-reported outcomePsA psoriatic arthritisPT physiotherapistRA rheumatoid arthritisRCT randomized controlled studyROM range of motionSD standard deviationSF-36 the short form 36 health surveySHCR Skåne health care registerSOFI signals of functional impairmentSpA spondyloarthritisSW social workerTNF-α tumour necrosis factor-alphaVAS visual analogue scaleWHO World Health Organization

Abbreviations and definitions


Introduction

The rapid development and change oftreatment and care for patients withinflammatory arthritis over the past twodecades is striking. Certain treatmentmodalities such as pharmacological andsurgical treatment have been well evaluated inboth prospective and retrospective settings.Evidence of the benefit of some non-pharmacological interventions such ascardiovascular and muscular strengthexercises has also been found. However, thereis less scientific evidence of the benefits ofcomplex non-pharmacological interventions

such as team-based rehabilitation, thus makingproper studies in this area needed. This thesisdescribes studies on, and the evaluation of,team-based rehabilitation in different settings,in different countries, using different methods.The patterns of health care utilization indefined population-based cohorts ofrheumatoid arthritis patients and referencesubjects have also been studied.

The historical perspective is included in thebackground as well as the prospects for thefuture in the general discussion.

Sofia Hagel 9

Background

Health

‘Health is a state of complete physical, mental,and social wellbeing and not merely theabsence of disease or infirmity’ (World HealthOrganisation 1946). Today we would probablyexclude ‘complete’ from the definition toprovide better agreement with the more modernunderstanding of the complex concept ofhealth. To study different aspects of healthdifferent models have been used.

Health status and health-related quality of life

Health status is defined as a measure of thefeelings and functions of a person, includingthe severity and the impact of symptoms,activity limitations (on functioning) andparticipation in life (Ware 1995). Health relatedquality of life (HRQoL) is a concept integratinghealth status with subjective wellbeing (Smithet al. 1999), since quality of life denotespeople’s emotional, social and physicalwellbeing, and their ability to function in theirdaily living. For rehabilitation and treatmentthe aspect of HRQoL is of outmost importance.HRQoL can be described as ‘the extent towhich needs are fulfilled’, and when evaluatedit intends to provide a summary of the impact ofa disease from the patient’s perspective(McKenna et al. 2004). HRQoL can beevaluated with generic or disease-specificoutcome measures. Instruments for measuringHRQoL are based on one of two approaches:health status or health care use (i.e. the directand indirect approaches) (Khanna et al. 2007).In the present work, the generic outcomemeasures SF-36 and NHP were used togetherwith the indirect utility measure EQ-5D.

The international classification offunctioning, disability and health (ICF)

In 2001, the World Health Organization (WHO2012a) approved the InternationalClassification of Functioning, Disability and

Health (ICF). The ICF was developed to helpovercome the difficulties encountered whendescribing disease, its treatment and theevaluation of outcome, and the complexrelations between them. The ICF wasdeveloped to integrate the domains offunctioning, disability and health, wherefunctioning is not regarded as a directconsequence of disease, rather as ‘theinteraction between personal attributes andenvironmental influence’(Rauch et al. 2008).Disability can be interpreted as the result of acomplex interaction between an individual andhis or her environment (Kostanjsek 2011a;Kostanjsek et al. 2011b; Kostanjsek et al.2011c). Health according to ICF (i.e. the degreeof functioning and disability) is dependent on:a) body function (physiological andpsychological functions), b) body structure(anatomical locations/parts/structures),c) activities (tasks) and d) participation(involvement in life situations, daily living andwork). Functioning and disability are alsoregarded as being modified by contextualfactors: e) environmental factors(surroundings and societal factors) andf) personal factors (individual circumstances,background and life, not related to health),together representing circumstances in theindividual’s life (Cieza et al. 2005a; Stucki et al.2005; World Health Organization 2012a). Thestructure and concepts of the ICF areillustrated in Figure 1.

In the context of the ICF, rehabilitation hasbeen defined as a health strategy aimed atenabling people with impaired health toachieve and maintain optimal functioning ininteraction with the environment (Stucki et al.2007a). Rehabilitation should thus beconsidered one of four health strategiestogether with prevention, cure and support(Stucki et al. 2007b).

The ICF framework has been applied andendorsed by the network Outcome Measuresin Rheumatology (OMERACT) (Stucki et al.


2007c; Boonen et al. 2009a) and by theAssessment of Spondyloarthritis InternationalSociety (ASAS) (Boonen et al. 2009b; Boonenet al. 2010).

Rehabilitation

‘Rehabilitation of people with disabilities is aprocess aimed at enabling them to reach andmaintain their optimal physical, sensory,intellectual, psychological and socialfunctional levels. Rehabilitation providesdisabled people with the tools they need toattain independence and self-determination’(World Health Organisation 2012b). The termrehabilitation also denotes the medicalspecialty of ‘physical medicine andrehabilitation’, ‘physical therapy and/orrehabilitation medicine’ (EncyclopaediaBritannica 2012). The organisation of thisspecialty differs between countries, and willnot be further elaborated on in this thesis. Thework described in this thesis concerns therehabilitation of patients with inflammatoryjoint diseases, where patients most often seekhealth care at departments of rheumatology,orthopaedic surgery or primary health care.

Chronic inflammatory arthritis

The concept of chronic inflammatory arthritis

(CIA) in this work covers RA andspondyloarthritis (SpA) with the subgroups ofankylosing spondylitis (AS) and psoriaticarthritis (PsA) (van Eijk-Hustings et al. 2012).CIA is diagnosed according to establishedcriteria including clinical findings, laboratoryanalyses and sometimes imaging. Thediagnostic and therapeutic strategies for CIAare based on national (Socialstyrelsen 2012;Svensk Reumatologisk Förening 2012) andinternational guidelines (Smolen et al. 2010;Braun et al. 2011). The importance of earlydiagnosis, early, effective treatment andregular follow-up and evaluation of RA andSpA has been emphasized (van Vollenhoven etal. 2009; Rostom et al. 2010; van Vollenhoven etal. 2012).

Rheumatoid arthritis

Rheumatoid arthritis is a chronic systemicinflammatory disease in which genetic, as wellas environmental factors, such as tobaccosmoking, influence both the onset and thecourse of the disease. A prevalence of 0.5-0.7%has been reported in Swedish adults(Simonsson et al. 1999; Englund et al. 2010),with a higher prevalence among women(0.94%) than in men (0.37%) (Englund et al.2010). Women have also been found to sufferworse consequences of the disease than men(Hallert et al. 2003; Tengstrand et al. 2004;Sokka et al. 2009; Ahlmen et al. 2010; Camachoet al. 2011; Hallert et al. 2012). The symptoms ofRA include joint swelling, pain, morningstiffness and impaired physical functioning(Heiberg et al. 2002; Scott et al. 2005; Hallert etal. 2012). Fatigue defined as an ‘overwhelmingfeeling of tiredness’ is another problemfrequently reported by patients (Wolfe et al.1996; Carr et al. 2003). The disease course isusually relapsing-remitting, with flaresalternating with periods of lower diseaseactivity (Lindqvist et al. 2002; Bingham et al.2011). The consequences of the disease forpatients cover a broad spectrum includingdestruction of the joints leading to impairedjoint function (Lindqvist et al. 2003; Nyhäll-Wåhlin et al. 2011), psychological distress(Smedstad et al. 1996; Smedstad et al. 1997)

Figure 1. Illustration of the ICF structure and concepts.

Sofia Hagel 11

osteoporosis and extra-articular mani-festations involving other organs such as thelungs, heart, nerves and skin. RA patients alsohave an increased risk of cardiovasculardisease (Nyhäll-Wåhlin et al. 2011; Turesson etal. 1999; Turesson et al. 2004; Kozera et al.2011) and increased mortality (Gabriel 2008a;Gabriel 2008b; Myasoedova et al. 2011).

Spondyloarthritis

Spondyloarthritis is a term encompassing AS,PsA, unspecified SpA, arthritis associatedwith irritated bowel disease and reactivearthritis. A prevalence of SpA of 0.45%-1% hasbeen reported (Haglund et al. 2011; Reveille etal. 2012).

Ankylosing spondylitis

Ankylosing spondylitis is a chronicinflammatory disease affecting the spine andoften also peripheral joints, with a prevalenceof 0.12% in the Swedish population aged 15years and older (Haglund et al. 2011). AS isstrongly associated with positive HLA-B27,although the pathogenesis is not completelyknown (McHugh et al. 2012). AS causes painand stiffness and also impairs functionalabilities as well as the ability to work and thesocial life of the patient (Dagfinrud et al. 2004a;Dagfinrud et al. 2005a; Strömbeck et al. 2009;Strömbeck et al. 2010; Bakland et al. 2011).Extra-articular manifestations occur in somepatients in the eye (uveitis/iritis), thegastrointestinal system, in the cardiovascularsystem, the skin or the skeleton (Carter et al.2011; Bremander et al. 2011; El Maghraoui2011).

Psoriatic arthritis

The exact prevalence of PsA is uncertain, butin a Swedish register study a prevalence of0.25% was found in those aged 15 years andolder seeking health care (Haglund et al. 2011).Joint pain and swelling, joint stiffness,enthesitis, fatigue and malaise are commonmanifestations of PsA. Some studies havereported co-morbidities and extra-articularmanifestations such as cardiovascular eventsand hypertension, obesity, hyperlipidaemia

and diabetes mellitus (type 2) (Gladman et al.2009; Husted et al. 2011; Khraishi et al. 2011).

Pharmacological interventions

The understanding of the pathogenesis of RA,SpA and other forms of CIA has improved overrecent decades. New drugs have beendeveloped and the ability to suppressinflammation has increased. Usefulpharmaceuticals include disease-modifyinganti-rheumatic drugs (DMARDs),methotrexate being the most commonly useddrug (Neovius et al. 2011). In 1999 TNF-αblockers were introduced. TNF-α blockershave good short- and long-term effects onpain, stiffness, physical function (Geborek etal. 2002; van Vollenhoven et al. 2009) andHRQoL (Gulfe et al. 2010). A lower incidence ofsevere extra-articular manifestations has beenreported in RA patients treated with TNFblockers (van der Horst-Bruinsma et al. 2009;Nyhäll-Wåhlin et al. 2012). Also otherbiological agents have successively beendeveloped and the modern treatment aim is tostart pharmacological treatment early and tostrive for remission or at least low diseaseactivity (Smolen et al. 2010).

Surgical interventions

Surgical treatment of CIA has been practicedover the years to reduce the inflammatoryprocess in the joints and/or tendon sheats, tocorrect malalignment and immobilize painful,joints (arthrodesis) and to replace jointsseverely affected by the disease (arthroplasty).Tendon surgery has also been practiced,especially in the hands. During the pastdecade, changes in surgical interventions havebeen reported. The numbers ofsynovectomies, arthroplasties andarthrodeses performed in hands and upper andlower limbs have been reported to decreasefrom mid 1990ies and forward (Weiss et al.2006; Weiss et al. 2008; Dafydd et al. 2012;Hekmat et al. 2011; Shourt et al. 2012). Thedecreasing number of surgical interventions inRA patients can probably be the result of theimproved pharmacological treatment (Pincus etal. 2005; Tanaka et al. 2008; Hekmat et al. 2011).


Nonpharmacological interventions - singleand complex interventions

Evidence concerning the benefits of exerciseand an active lifestyle was first presented in thelate 1980s (Minor et al. 1988; Galloway et al.1993; Neuberger et al. 1993; Stenstrom 1994a;Ekdahl et al 1989; Ekdahl et al 1992), since thenevidence has continued to grown. Dynamicexercise to gain muscular strength, muscularendurance and function is together withaerobic exercise to improve aerobic capacityexamples of single interventions previouslystudied (Stenstrom 1994b; Dagfinrud et al.2004b; Cairns et al. 2009; Hurkmans et al. 2009;Dagfinrud et al. 2011; Hurkmans et al. 2011a).

Complex interventions

Complex intervention denotes nonpharmaco-logical treatment targeting more than oneaspect of health. Complex interventions arepreferably delivered by teams (Iversen et al.2006). Thus team treatment is an example ofcomplex intervention, beneficial for patientswith complex consequences of the disease(Guillemin et al. 2011). Multidisciplinary teamswere introduced in health care in the early 20thcentury, and are now active in both primary andsecondary care for both in- and outpatients(Vliet Vlieland 2003; Prvu Bettger et al. 2007;Kilpatrick et al. 2011; Jesmin et al. 2012).

History of rheumatological care

Findings from excavations have shown that ASaffected the ancient Egyptians (Ruffer 2011), aswell as people living in the 900th century andmediaeval times (Leden et al. 2009; Leden et al.2010). Different medical and non-medicalmethods of treatment have been describedthroughout history. However, patients withCIA had to struggle for centuries withineffective treatment. Physical disabilityaffected the individual’s ability to earn a living,and to live independently.

To improve life for patients with CIA theSvenska Vanföreanstalternas Centralkommitté,now the Swedish Institute of AssistiveTechnology, was established in 1911. Through

this organisation people suffering frominflammatory and tubercular arthritis and post-polio syndrome were offered medical treatment(including splints and assistive devices) andvocational training at a number of institutionsin different parts of Sweden (Leden et al. 1996 ).Three specialized hospitals run by theassociation Riksförbundet mot Reumatism(RMR), at Spenshult, Strängnäs andÖstersund were opened between 1953 and1969. Regional health care authoritiessuccessively took over responsibility for, andthe organization of, rheumatic care from 1969(Leden 1995; Leden et al. 1996; Klareskog2005).

Rheumatological orthopaedic surgery wasfirst practised on patients with inflammatoryarthritis in Heinola, Finland in the late 1950sand early 1960s (Vainio et al. 1961; Lindstroemet al. 1963; Mitchell 1964). New pharma-ceuticals such as corticosteroids (1948), gold(1929), sulfasalazine (1940-70) and penicilla-mine (1960) were also developed, providingsufferers of RA some relief in their daily life(Leden 1995; Klareskog 2005). Althoughrelieving some symptoms, these drugs wereaccompanied by significant risks of severeadverse events. It was not until the late 1980s,when methotrexate and combination therapy,and later also biological treatment (TNF-αblockers and others), enabled more successfulsuppression of disease activity, that peoplewith inflammatory arthritis could live a morenormal life (Kavanaugh et al. 2012).

Development of rheumatological teamrehabilitation

The idea of rehabilitating patients with RA wasfirst practiced in the 1950s, in the USA. In anarticle from 1949, Rusk suggested that teamrehabilitation should be introduced as the thirdphase of medicine, following diagnosis andtreatment (Rusk 1949). His idea has persisted,although rehabilitation is nowadaysconsidered to be complementary to pharmaco-logical and surgical treatment.

In 1966, Håkan Brattström, an orthopaedicsurgeon, and Merete Brattström, a physician inrehabilitation medicine with rheumatological

Sofia Hagel 13

training, at the Lund University Hospitalvisited hospitals treating and rehabilitatingpatients with CIA in the USA and Canada.Their ideas on surgery and rehabilitation ininflammatory arthritis were strengthened, andthey returned to Lund with improvedknowledge and new ideas. In 1968 theReumatikerdispensären, a multiprofessionaloutpatient clinic, was started in Lund(Brattstrom et al. 1970; Brattstrom et al. 1977;Brattstrom et al. 1980). Their rehabilitationmodel spread throughout Scandinavia.

Rheumatological team rehabilitation hasbeen described, used and evaluated inNorthern Europe over the past 20-30 years. Arandomized controlled study in theNetherlands showed that patients partici-pating in an 11-day inpatient rehabilitationprogramme improved significantly comparedto controls receiving ordinary out-patient care.The improvement persisted after 2 years (VlietVlieland et al. 1997a; Riemsma et al. 1998). In asystematic review, the benefits of in- versusoutpatient rehabilitation were inconclusive(Vliet Vlieland et al. 1997b). In a later study,where inpatient and day patient multi-disciplinary team care and clinical nursespecialist care were compared the latter wasfound to provide comparable quality of life andutility, but at a lower cost than the multi-disciplinary interventions (van den Hout et al.2003).

Patients receiving care from the clinical nursespecialist expressed less satisfaction than thepatients’ counselled by inpatient or outpatientteams (Tijhuis et al. 2002). In the long term, thedifferent kinds of rehabilitation were found tobe comparable (Tijhuis et al. 2003). In anobservational study conducted in southernSweden it was found that a 3-week outpatientintervention was suitable and beneficial forpatients with both long and short durations ofdisease (Jacobsson et al. 1998). In Table 1 theevidence on rheumatological rehabilitation hasbeen summarized. Both short-term and long-term effects on several aspects of health havebeen described (Vliet Vlieland et al. 1997a;Jacobsson et al. 1998). However, evidence isscarce since limited numbers of participants

and outcome measures evaluated in eachstudy together with limited description of theperformed interventions hamper replicationand comparison (Vliet Vlieland 2003; Hammond2004a).

An area with special needs for complexinterventions including also non-medicalactivities is vocational rehabilitation. Improvedability to work has been found in RA patientsas a result of team rehabilitation adopting avocational approach (Nordmark et al. 2006). ADutch study on vocational team rehabilitationof patients with arthritis at risk of losing theirjob reported that the same percentage (23-24%)had lost their jobs within 24 months, but thatthe patients who had been counselled had lessfatigue and better mental health (de Buck et al.2005). The findings of another Dutch study asto whether a vocational rehabilitationprogramme increased or decreased the totalcost to society were unclear/inconclusive,however, rehabilitation varied widely incontent from only two counselling sessions to(a) more extensive programme(s) (van denHout et al. 2007).

Rheumatological rehabilitation teams

A team is defined as two or more professionalsworking together with the patient (Petersson2006). Within rheumatology, the team oftencomprises a rheumatologist, a nurse, aphysiotherapist (PT), an occupationaltherapist (OT), a social worker (SW) and/or apsychologist, and sometimes a podiatrist,dietician, assistant nurse or orthopaedicsurgeon (Vliet Vlieland 2003).

The work of a multidisciplinary team is co-ordinated by one of the team members and isusually carried out in parallel with little overlap.In the interdisciplinary team the members havea higher degree of communication and regularmeetings when treatment goals and plans arediscussed (Korner 2010). In a trans-disciplinary team the team members areresponsible for problem solving and goalsetting across the disciplines, instead ofbetween the disciplines, as in an


Tab

le 1

. D

escr

ipti

on

of

stu

die

s o

n r

heu

mat

olo

gic

al t

eam

reh

abili

tati

on

in

RA

pat

ien

ts f

rom

199

6 u

nti

l to

day

.

ST

UD

YP

atie

nts

Con

trol

sTe

am m

embe

rsIn

terv

entio

n/Te

amL

engt

h of

Fol

low

up

Fol

low

up

Eva

luat

ion

Out

com

eA

utho

rn

nre

habi

litat

ion

prog

ram

me

inte

rven

tion

Len

gth

ofP

oint

s of

met

hods

Yea

rag

eag

est

udy

eval

uatio

nS

tudy

des

ign

% fe

mal

es%

fem

ales

Vli

et V

liel

and

3941

UC

Rhe

umto

logi

st,

Inpa

tien

t. N

ursi

ng, b

ed r

est.

11 d

ays

1 ye

arP

re,

2, 4

,V

AS

di

s ac

tS

ign*

1996

56 y

ears

55 y

ears

nurs

e, P

T, O

T,R

OM

, M

uscl

e st

reng

th.

12 w

eeks

VA

S p

ain

Sig

n*R

CT

6476

SW

Info

on:

join

t pro

tect

ion,

1 ye

arV

AS

fatig

ueS

ign*

+ n

onse

lf-c

are,

dai

ly li

ving

. (Jo

int

VA

S m

orni

ng s

tiff

Sig

n*al

loca

ted

spli

nts,

ada

ptiv

e eq

uip)

.H

AQ

NS

grou

pC

opin

g/fi

nanc

e.A

IMS

Gri

p st

reng

thS

ign*

SW

joi

nts

Sig

n*R

AI

Sig

n*E

SR

NS

VA

S p

hysi

cian

dise

ase

acti

vity

Vli

et V

liel

and

-’’-

-’’

- -

’’-

-’’

- -

’’-

2 ye

ars

-’’-

-’’

-N

S19

97R

CT

Jaco

bsso

n87

-R

heum

tolo

gist

,O

utpa

tien

t. N

ursi

ng.

RO

M,3

wee

ks,

3 m

onth

sP

re,

post

VA

S p

ain

Sig

n19

9855

yea

rs n

urse

, P

T, O

T,fo

ot s

itua

tion

,w

orki

ng d

ays

and

3V

AS

glo

bal

dis

actS

ign

Obs

erva

tiona

l74

SW

phys

ioth

erap

y(?)

, so

cial

mon

ths

HA

QS

ign

situ

atio

n.S

OF

IS

ign

Edu

cati

on a

ccor

ding

toR

AI

Sig

na

stru

ctur

ed p

rogr

amm

eE

SR

Sig

n{L

indr

oth,

199

7 #1

000}

Sw

olle

n jo

int

44S

ign

DA

S, L

iker

tS

ign

Tij

huis

71/7

1/68

Cli

nica

l nur

seC

lini

cal n

urse

spe

cial

ist

Pre

, 6,

12,

HA

QN

o su

stai

ned

2002

54/6

0/60

spec

iali

st v

s in

-pr

ovid

ed in

form

atio

n ab

out

24 w

eeks

MA

CTA

Rdi

ffer

ence

sR

CT

year

san

d ou

tpat

ient

RA

, pr

escr

ibed

joi

nt s

plin

tsan

d 1

year

RA

ND

-36

in c

lini

cal

Cli

nica

l72

/75/

79te

aman

d, a

dapt

ive

equi

pmen

t.R

AQ

OL

effe

ctiv

enes

sSp

ecia

lised

Rhe

umat

olog

ist,

Nur

se a

lso

refe

rred

to P

T,D

AS

betw

een

clin

ical

nurs

e/in

patie

nt-

nurs

e, P

T, O

T.O

T a

nd S

W i

f ne

eded

.nu

rse

spec

iali

st/o

utpa

tien

tS

WIn

pati

ent a

nd d

ay p

atie

ntan

dm

ulti

disc

ipli

nary

mul

tidi

scip

lina

ry fo

llow

ed a

mul

tidi

scip

lina

rypr

ogra

mm

epr

ogra

mm

e of

equ

al in

tens

ity,

in-/

out

pati

ent

sett

ing.

tail

ored

to

indi

vidu

al n

eeds

.

Sofia Hagel 15

ST

UD

YP

atie

nts

Con

trol

sT

eam

mem

bers

Inte

rven

tion/

Team

Len

gth

ofF

ollo

w u

pF

ollo

w u

pE

valu

atio

nO

utco

me

Aut

hor

nn

reha

bilit

atio

n pr

ogra

mm

ein

terv

entio

nL

engt

h of

Poi

nts

ofm

etho

dsY

ear

age

age

stud

yev

alua

tion

Stu

dy d

esig

n%

fem

ales

% fe

mal

es

Tij

huis

-’’

- -

’’-

-’’

- -

’’-

-’’

- -

’’-

-’’

- -

’’-

No

diff

eren

ces

2003

betw

een

the

grou

psR

CT

van

den

Hou

t-’

’- -

’’-

-’’

- -

’’-

-“-

-’’-

.’’-

-’’-

Cli

nica

l nur

se20

03sp

ecia

list

RC

Tpr

ovid

ed e

quiv

alen

tqu

alit

y of

life

and

util

ity,

at lo

wer

cos

ts

Bre

edla

nd19

15 W

LC

PT,

OT,

SW

,O

utpa

tien

t gro

up8

wee

ks22

wee

ksP

re,

post

Vo2

max

Sig

n*20

1145

yea

rs52

yea

rsps

ycho

logi

st,

prog

ram

me,

exe

rcis

e of

Exe

rcis

e 2

and

22M

uscl

e st

reng

thN

SR

CT

6380

diet

icia

npa

rtly

indi

vidu

aliz

edda

ys/w

eek,

3w

eeks

AIM

S2

NS

exer

tion

and

hour

s /w

eek

AS

ES

NS

mul

tidi

scip

lina

ry e

duca

tion

Edu

cati

on 1

on d

isea

se c

onse

quen

ces

day/

wee

k, 1

and

acti

vity

man

agem

ent.

hour

.W

LC

rem

aine

d on

wai

ting

list

.

*=A

t end

of

reha

bili

tati

onR

CT

= r

ando

miz

ed c

ontr

olle

d tr

ial,

UC

=us

ual

Car

e, P

T=

phys

ioth

erap

ist,

OT

=oc

cupa

tion

al t

hera

pist

, SW

=so

cial

wor

ker,

RO

M=

rang

e of

mot

ion

, VA

S=

visu

al a

nalo

gue

scal

e,H

AQ

=he

alth

ass

essm

ent q

uest

ionn

aire

, RA

I=R

ichi

e ar

ticu

lar

inde

x, D

FI=

Dou

gado

s fu

ncti

onal

inde

x , H

AD

=ho

spit

al a

nxie

ty a

nd d

epre

ssio

n sc

ale,

WL

C=

wai

ting

list

con

trol


interdisciplinary team (Cartmill et al. 2011).Different health professionals have distinctroles (van Eijk-Hustings et al. 2012), as has thepatient (de Wit et al. 2011a).

Teams in rheumatological rehabilitation havebeen responsible for the transfer of knowledgeon pain management, joint protection,activities in daily life and other aspects ofhealth improvement (Lindroth et al. 1997). Thegrowing evidence of the benefits of a morephysically active lifestyle in patients with CIAhas been incorporated into team rehabilitation.Team rehabilitation can take place in aninpatient or outpatient setting (day care) (VlietVlieland 2003).

Evaluation of modern rheumatologicalteam rehabilitationTeam rehabilitation is multimodal and complex,and one reason for the limited evidence of itsbenefits could stem from difficulties indescribing and evaluating the complex models

(Wade et al. 2000; Dieppe 2004; Prvu Bettger etal. 2007; Guillemin et al. 2011; Tugwell et al.2011). The formerly used biomedical model hasalso contributed to the lack of relevant andreliable descriptions of health status and theeffects of pharmacological and nonpharma-cological/complex interventions in patientswith chronic diseases (Guillemin et al. 2011).

Different conceptual models of descriptionand evaluation have been suggested.Structure, process and outcome are regardedas essential parts of the Integrated (HealthCare) Team Effectiveness Model (Lemieux-Charles et al. 2006), and Wade suggested thatthey should be included in the description andanalysis of team rehabilitation (Wade et al.2000; Wade 2005). A framework for thedescription of rheumatological teamrehabilitation was developed by a literaturereview and a Delphi process in which healthprofessionals and patients from four Europeancountries participated. Following thatframework it is essential to also describe the

Figure 2. Description of the STAR-ETIC framework (Klokkerud et al. 2012)

STAR-ETIC framework

Structure for team care: • Criteria for admission and discharge • Funding • Clinical setting • Rehabilitation team • Patient involvement • Family involvement • Rehabilitation management • Length of team rehabilitation • Follow-up

Process of team care: • Goals • Interventions • Assessment and evaluation

Outcome of team care: • Body functions (icf) • Activity (icf) • Participation (icf) • Health related quality of life • Self management skills • Goal attainment • Patient satisfaction • Harms/adverse effects • Cost

National context: •Welfare- and health care system

Sofia Hagel 17

national context in which the rehabilitation isbeing undertaken, in addition to the structureand process for team care, Figure 2 (Klokkerudet al. 2012).

Randomized controlled trials (RCTs) havebeen a golden standard in evaluation of healthcare interventions but observational studiescontribute with other aspects (vanVollenhoven et al. 2011) especially in complexinterventions (Prvu Bettger et al. 2007). Well-designed clinical trials evaluated with patient-centred outcomes are needed, especially onpatients with early disease (Hammond 2004a).Specific information on different areas ofrehabilitation is insufficient, contrary toincreasing evidence in guidelines andsystematic reviews (Guillemin et al. 2011).

In order to describe the outcome of teamrehabilitation, measures describing HRQoL,pain, fatigue, physical function have beensuggested by OMERACT, GRAPPA and ASASin their recommendations on monitoring andevaluation of patients and health careinterventions (Tugwell et al. 1993; Gladman etal. 2005; Gladman et al. 2007a). There is a welldocumented interaction between generalhealth and most of the above describedaspects of health in interventions andevaluations. Each item is therefore presentedseparately below.

Health related quality of life

All forms of CIA have negative effects onHRQoL (Dagfinrud et al. 2004a; Kiltz et al. 2009;Salaffi et al. 2009; West et al. 2009; Lee et al.2010; Ovayolu et al. 2011; Strand et al. 2012a).Conflicting findings on the interactionbetween HRQoL and measures of diseaseactivity have been presented, but in a largeDanish study on RA patients, HRQoL andmeasures of disease activity were found to bestrongly related. When disease activity waswell controlled, HRQoL among the patientswas found to be comparable to that of thegeneral population (Linde et al. 2010). Socio-demographic characteristics have also beenfound to affect HRQoL (Kiltz et al. 2009). Otherimportant consequences of CIA such asfatigue (Rat et al. 2012), not being able to cope,

helplessness and poor self-reported func-tioning (Nicassio et al. 2011) are closely relatedto HRQoL. Improved HRQoL has been foundin patients with CIA treated with DMARDs andTNF-blockers (Emery et al. 2006; van der Heijdeet al. 2009; Gulfe et al. 2010; Kavanaugh et al.2010; Saad et al. 2010; Staples et al. 2011;Strand et al. 2012a; Strand et al. 2012b).

HRQoL can be evaluated with generic ordisease-specific outcome measures.Instruments for measuring HRQoL are basedon one of two approaches: health status orhealth care use (i.e. the direct and indirectapproaches) (Khanna et al. 2007). In thepresent work, the generic outcome measuresSF-36 and NHP were used together with theindirect utility measure EQ-5D.

Different aspects affecting health arepresented separately below.

Pain

Pain is one of the key symptoms of CIA, oftenpresenting at the onset of the disease. Paincaused by structural damage can be persistentalso when disease activity is well controlledusing DMARDs (Radner et al. 2012). Pain has asignificant impact on HRQoL if not managed(Ahlstrand et al. 2011; Smolen et al. 2012). Therelief of pain is an important target inrheumatological rehabilitation using differentinterventions ranging from pharmacotherapyto surgery, and including physical treatment(cold or heat), TENS, physical exercise,balneotherapy, and ergonomic devices(Hurkmans et al. 2009; Baillet et al. 2010; vanden Berg et al. 2012). Pain measures areincluded in most patient reported outcomemeasures for disease activity and diseaseseverity within rheumatology. Pain is alsoincluded in measures of HRQoL such as EQ-5D, the SF-36 and the NHP.

Fatigue

Fatigue is a clinical feature in all forms of CIAand has been found to be associated with pain,disease activity, physical functioning andHRQoL (Dagfinrud et al. 2005b; Aissaoui et al.2011; Garip et al. 2011; Rat et al. 2012). Hewlettet al. recently reported that patients with RA


highlight fatigue as a major concern, asimportant as pain, overwhelming, unmana-geable and ignored by clinicians (Hewlett et al.2011). Up to 70% of RA patients suffer fromfatigue, while the prevalence of fatigue in otherforms of CIA is unknown. In recent years it hasbeen recommended that fatigue should beincluded as an RA outcome measure in clinicalpractice and clinical trials. This has led tointernational consensus in the (OMERACT)network that fatigue should be measured in allRA trials (Hewlett et al. 2005a; Hewlett et al.2005b; Kirwan et al. 2007; Repping-Wuts et al.2008).

Mental wellbeing

Psychological distress, anxiety and depressionare well documented comorbid features of bothrecent onset and longstanding CIA.Depression has been reported in 13-42% ofpatients with RA. Mental wellbeing has alsobeen proved to be affected bysociodemographic status (Margaretten et al.2011a; Margaretten et al. 2011b; Gafvels et al.2012). Depression is also a comorbid feature inAS and PsA (Carneiro et al. 2011). An inverserelation has been reported between coping andpain and disease activity in all forms of CIA(Martindale et al. 2006; Brionez et al. 2009;Carneiro et al. 2011; Gafvels et al. 2012).Physical and mental aspects are often parallelaspects of the disease consequences forpatients with CIA. Mental aspects are a naturalpart of the care in team rehabilitation, butpsychologists and/or psychiatric specialistsmust be consulted for more severe problems.

Self-efficacy

Perceived self-efficacy refers to ’the belief inone’s own capability to organize and performthe activities needed to reach a desiredoutcome or result‘ (Bandura 1986; Bandura2004; Primdahl et al. 2012). Self-efficacy hasbeen proved to benefit from educationprogrammes, or rather self-managementprogrammes, where the patients are trained inself-care skills (O’Leary et al. 1988; Lorig et al.1998a). Self-management has been defined as’an individual’s ability to manage the

symptoms, treatment, physical andpsychosocial consequences and lifestylechanges inherent in living with a chroniccondition‘ (Barlow et al. 2002). Nonpharma-cological care and complex interventionscomprise patient education which includeinformation and advice about the disease,medication, exercise, finding an appropriateactivity level, joint protection and non-pharmacological pain relief methods (VlietVlieland et al. 2011) these kinds of inter-ventions are targeting both self-managementand self-efficacy. Self-efficacy in RA patientshas been found to be related to, among otherthings, physical activity levels and also topredict improved health status (Osborne et al.2007; Knittle et al. 2011).

Patient education has been proven beneficialto improve pain, HRQoL and self-efficacy.Patient education and self-managementprogrammes were developed and introduced inthe USA and the UK during the 1970s. The aimof self-management was to improve patients’knowledge of the implications of the disease;originally to inform the patient about jointprotection and also to empower the patientaccording to the recently developed theorieson self-efficacy (Lindroth et al. 1989; Hammondet al. 1999; Helliwell et al. 1999; Hammond et al.2004b). Unfortunately, this led to only short-term benefits (Schrieber et al. 2004).

Physical functioning

Strength, mobility, freedom of movement,balance and coordination are essential forphysical functioning. One major feature of CIAis impaired physical function resulting frompain, stiffness, fatigue, swelling andinflammatory activity (Eberhardt et al. 1990;Lee et al. 2010). Reduced range of motion(ROM), muscle strength and aerobic capacityare other consequences of the diseaseaffecting functioning, which appear later(Ekdahl et al. 1989; Ekdahl et al. 1992). In aSwedish survey on RA patients with a diseaseduration of less than 6.5 years, decreasedlower-limb muscle function was found in 72%,reduced grip strength in 94%, reduced ROM in94% and reduced functional balance in 68% of

Sofia Hagel 19

the patients (Eurenius et al. 2005). Similarfindings in patients with more longstandingdisease support these findings (Ekdahl et al.1989; Ekdahl et al. 1992; Van den Ende et al.1998).

Since Steinbrocker’s evaluation offunctioning in the 1940s different aspects havebeen recommended for the evaluation ofphysical function. These can be observed by arheumatologist, nurse, PT or an OT or theperceived function can be reported by thepatient using PROs. Evaluation of function isimportant and is included in the OMERACTcore sets for evaluation and monitoring of alltypes of CIA (Buchbinder et al. 1995; van derHeijde et al. 1999; Gladman et al. 2007a;Gladman et al. 2007b). The patient perspectiveis advocated by the OMERACT and theEULAR networks (Kirwan et al. 2005b; de Witet al. 2011b; Kirwan et al. 2011).

Physical activity

Patients with inflammatory arthritis are at riskof developing cardiovascular comorbidities(Turesson et al. 2004; Gladman et al. 2009;Bremander et al. 2011; Peters et al. 2010; Atzeniet al. 2011; Boehncke et al. 2011; Husted et al.2011; Papadakis J.A., 2012). Traditional riskfactors and inflammatory burden have beenrecognized as causative factors (Peters et al.2010). The contribution of low physical activityto lower daily energy expenditure has beenreported among patients with RA and SpA(Eurenius et al. 2005; van den Berg 2007a;Sokka et al. 2008; Metsios et al. 2009; Henchozet al. 2012; Lee et al. 2012). The recommendedphysical activity for the general population isexercise at a moderate intensity for at least 30minutes, at least 5 days a week or physicalactivity at a vigorous level for at least 20minutes, at least 3 days a week (Work GroupRecomendations 2002; Garber et al. 2011).Physical activity has been found to improvedisease-specific consequences such asimpaired health status and muscle strength inpatients with RA (Brodin et al. 2008).

In Swedish patients with RA, 47% werephysically active at levels insufficient topromote general health (Eurenius et al. 2005).

One year later, the physical activity of the samepatients was similar. The only predictor of highphysical activity found was high self-reportedphysical activity one year earlier (Eurenius etal. 2007). Patients with RA who exercise or whoare physically active seem to overestimate theirlevel of physical exertion (Cuperus et al. 2012;Eurenius et al. 2005). Lack of knowledge andmotivation, together with the belief thatexercise will have harmful effects and causefatigue and pain have been reported aspreventing physical activity (Kamwendo et al.1999; van den Berg et al. 2007b; Swardh et al.2008). Recent research has also shown thathealth professionals were uncertain aboutadequate levels of physical activity for RApatients (Hurkmans et al. 2011b). Furthermore,exercise programmes for patients with AS didnot achieve sufficient levels of exertion toaffect the participants’ health (Dagfinrud et al.2011). The significantly lower daily energyexpenditure of RA patients has mainly beenexplained by less physical exertion than inhealthy controls (Henchoz et al. 2012).

Aerobic capacity

Regular physical activity at a sufficient level isneeded to maintain a certain aerobic capacity.Aerobic exercise has been found to be safe andbeneficial, promoting HRQoL. Long-termaerobic exercise also seems to have a beneficialeffect on cardiovascular health in patients withCIA (Turesson et al. 2007; Metsios et al. 2008;Metsios et al. 2009; Halvorsen et al. 2012; Jansevan Rensburg et al. 2012).

The patient’s perspective

Throughout history, the patient has beenregarded as a passive care taker and thephysician’s view of the patient’s situation andphysician-defined outcomes have dominated.However, today patients are considered asactive health care consumers and inrehabilitation they are obvious members of theteam (Petersson 2006). During the past decade,the patient’s perspective has become thesubject of growing interest since it is now


considered to be as informative as, or moreinformative than, the physician-assessedoutcome (Pincus et al. 2009; Guillemin et al.2011). Moreover, patients and physicians havebeen found to assess disease activitydifferently in RA (Barton et al. 2010), AS(Spoorenberg et al. 2005) and PsA (Dandorferet al. 2012). Patient perspective sessions wereintroduced by OMERACT in 2002 (Kirwan etal. 2003). The importance of including andraising awareness of the patient perspectivehas also been underlined in other contexts, forexample, the CARE conferences (Iversen 2009;Petersson et al. 2005; Kjeken et al. 2010). Theincorporation of patients’ perspectives hashelped health care professionals to understandthe importance of targeting fatigue in treatmentand evaluation, and the importance ofstudying and evaluating flares and otheraspects of daily life that are affected by CIA(Kirwan et al. 2005a,b; Kirwan et al. 2007a,b;Alten et al. 2011; Bingham et al. 2011; Hewlettet al. 2012). The patients are now also oftenactive participants in both the planning and theperformance of research projects (Kjeken et al.2010)

Health care utilization

Increased utilization of health care is aninevitable consequence of CIA. Theintermittent course of the disease with flaresand relapses, impaired physical function, andcomorbidities all contribute to an increasedneed of health care. However, new effectivepharmacological strategies seem to bereducing the need for hospital resources andimproving productivity in patients withestablished disease (Bansback et al. 2005;Olofsson et al. 2010). Patients with early RAtreated according to new regimens could beexpected to suffer from less comorbidity, lessimpaired work ability and shorter periods ofhospitalization in the future (Bansback et al.2009). However, although RA-relatedorthopaedic surgery and length ofhospitalization have been found to decrease(Sandhu et al. 2006; Weiss et al. 2008; Hekmatet al. 2011; Shourt et al. 2012) it is difficult topredict what the future will bring in the longterm in RA-related health care. Information onactual health care utilization is scarce and, tosome extent, conflicting (Fautrel et al. 2011).Improved pharmacological treatmentmodalities place high demands on monitoring,and thus contribute to some treatment-drivenhealth care utilization.

Structure for team care:

• STUDY I •STUDY IV

•Related studies: -STAR-ETIC structure & process

Process of team care:

• STUDY I

•Related studies: -STAR-ETIC structure & process -STAR-ETIC goal setting

Outcome of team care:

• STUDY I •STUDY II •STUDY III

National context: •Study IV

Sofia Hagel 21

Methods - Data sources

1. The STAR-ETIC projectThe Scandinavian Team Arthritis Register(STAR) was initiated in 2005 by members ofSwedish and Norwegian rheumatologicalteams and researchers. It was soon extended toinclude Danish and Dutch arthritisrehabilitation teams within the European TeamInitiative for Care (ETIC), and became theSTAR-ETIC project, www.star-etic.se (StudyII). Eighteen sites (7 specialist centres and 11rehabilitation institutions) practicing teamrehabilitation for arthritis patients wereinvolved in this project.

The main objective of the STAR-ETICproject was to describe and explore thestructure, the process, and the outcome ofrehabilitative team interventions in patients

with inflammatory arthritis in Northern Europe.Inclusion criteria were patients aged 18 or morescheduled for a rehabilitation period of at leastone week duration and with an inflammatoryjoint disease, CIA. Exclusion criteria weresevere psychiatric comorbidity or inability tocommunicate in written Swedish/Dutch/Danish/Norwegian. Evaluations were per-formed at the beginning and end of reha-bilitation and at two points of follow-up, 6 and12 months after rehabilitation. Patients’diagnosis was confirmed by a rheumatologistat each site. Brief information on each parti-cipating country is given below, furtherinformation on structure and process at theparticipating countries is presented in Table 2.

STAR-ETIC framework

Figure 3. Description of aspects of the STAR-ETIC framework covered by studies I-IV and related studies.


Tab

le 2

. S

ho

rt d

escr

ipti

on

of

the

stru

ctu

re a

nd

pro

cess

co

mp

on

ents

of

arth

riti

s re

hab

ilita

tio

n a

s p

erfo

rmed

wit

hin

th

e S

TAR

-ET

IC p

roje

ct.

Th

e d

etai

ls a

re p

rese

nte

d a

s p

rese

nt

(x=

yes,

pro

vid

ed)

or

no

t (-

=n

o, n

ot

pro

vid

ed)

or

no

t ap

plic

able

(n

a) a

cco

rdin

g t

o s

tud

y si

tes

in t

he

fou

rS

TAR

-ET

IC c

ou

ntr

ies.

Cou

ntry

Den

mar

kth

e N

ethe

rlan

dsN

orw

aySw

eden

(n=

91)

(n=

85)

(n=

157)

(n=

410)

Stu

dy S

ite

Sit

e D

1S

ite

NL

1S

ite

N1

Sit

e N

2S

ite

N3

Sit

e N

4S

ite

N5

Sit

e S

1S

ite

S2

Sit

e S

3

Cri

teri

a fo

r adm

issi

on a

nd d

isch

arge

Ref

erre

d fr

om m

edic

al d

octo

rsx

xx

xx

xx

xx

xw

ithi

n or

out

side

hos

pita

lD

isch

arge

set

at a

dmis

sion

x-

xx

xx

xx

xx

Dis

char

ge p

rede

term

ined

--

--

-x

--

xx

(fix

ed p

rogr

amm

e)D

isch

arge

dep

ende

nt o

n-

x-

--

--

--

-go

al a

chie

vem

ent

Cli

nica

l set

ting

(ty

pe o

f se

ttin

g)

Hos

pita

l in

pati

ent

x-

xx

x-

-x

--

Hos

pita

l ou

tpat

ient

-x

--

-x

--

xx

Reh

abil

itat

ion

cent

re-

--

--

-x

--

-

Reh

abil

itat

ion

team

(ty

pe o

f pr

ofes

sion

s on

dep

artm

ent l

evel

)

Med

ical

doc

tor (

rheu

mat

olog

ist)

xx

xx

xx

xx

xx

Phy

siot

hera

pist

xx

xx

xx

xx

xx

Occ

upat

iona

l the

rapi

stx

xx

xx

xx

xx

xN

urse

xx

xx

xx

xx

xx

Soc

ial w

orke

rx

xx

xx

xx

xx

xP

sych

olog

ist

--

x-

--

--

--

Nut

ritio

ner

x-

--

--

--

--

Oth

erx

-x

xx

-x

xx

x

Reh

abil

itat

ion

team

(co

mm

unic

atio

n fo

rm)

Wee

kly

team

mee

ting

sx

xx

xx

xx

xx

xO

ther

mee

ting

s w

hen

need

edx

xx

xx

xx

xx

x

Sofia Hagel 23

Reh

abil

itat

ion

man

agem

ent

Indi

vidu

al r

ehab

ilit

atio

n pl

anx

xx

xx

xx

xx

xS

tand

ardi

sed

tool

-x

--

--

--

--

Ele

ctro

nic

base

d to

ol-

x-

--

--

--

-

Goa

ls

Indi

vidu

al g

oals

def

ined

xx

xx

xx

xx

xx

Dev

elop

ed to

geth

er w

ith

xx

xx

xx

xx

xx

team

mem

ber(

s)G

oals

cla

ssif

ied

acco

rdin

g-

x-

--

--

--

-to

the

IC

F

Gro

up s

essi

ons

Gro

up e

duca

tion

x-

xx

xx

x-

xx

Gro

up e

xerc

ise

xx

xx

xx

xx

xx

Type

of

indi

vidu

al tr

eatm

ent m

odal

itie

s

Info

rmat

ion/

cou

nsel

ling1

x-

xx

xna

xx

xna

Indi

vidu

al e

xerc

ises

2x

xx

xx

nax

xx

naIn

divi

dual

phy

sica

l tre

atm

ent,

--

xx

xna

xx

xna

or h

ands

on

Sel

f tra

inin

gx

-x

xx

xx

xx

na


Rehabilitation settings

SwedenIn Sweden three different rehabilitationsettings participated.

• The Rheuma Rehab, the department forrheumatological rehabilitation, at the Clinic ofRheumatology Lund, Skåne UniversityHospital (Studies I, II and III). One version ofthe rehabilitation programme was developedfor patients with peripheral arthritis (PA),another version of the programme wasdeveloped for patients with SpA, with mainlyaxial problems. Criteria for referral: 1) adiagnosis of CIA, 2) stable and effectivepharmacological treatment, 3) a specified needfor team-based rehabilitation, not met at aroutine outpatient clinic, and 4) ability to dressand groom. Patients were enrolled in groups of6-7, for the 18-working-day programme ofrehabilitation. Follow-up after 4 and 12 monthswas mandatory, and was regarded as part of theprogramme (Study I and III). A follow-up after 6months was added during participation in theSTAR-ETIC project (Study II).

• The Department of Rheumatology inMalmö, Skåne University Hospital (Study II).Patients were enrolled in groups ofapproximately 4-6 patients. This five daysoutpatient rehabilitation programme wasmainly educational focusing primarily onpatients with early disease. The programmeincluded some introduction in physicalactivity/exercise.

• The Spenshult Hospital for RheumaticDiseases (Study II). Patients with a diagnosisof CIA with a specified need for team-basedrehabilitation not met at a routine outpatientclinic were referred to this inpatientrehabilitation. Rehabilitation length andcontent was tailored to the patients’ individualneeds and progress.

Denmark• The Kong Christian X Hospital,

University of Southern Denmark (Study II).Patients with a diagnosis of CIA with aspecified need for team-based rehabilitationwere referred to this inpatient rehabilitation.Length and content of rehabilitation was

tailored to the patients’ needs and progress.

Norway• In Norway five different rehabilitation

settings participated, representing 13 specificrehabilitation units (Study II). Four hospitalsparticipated, whereof three provided inpatientrehabilitation (NRRE Diakonhjemmet Hospital,Martina Hansen Hospital, and LillehammerRheumatological Hospital) and one providedoutpatient rehabilitation (Ostfold Hospital).

Nine inpatient rehabilitation centresparticipated in the STAR-ETIC project. Six ofthe rehabilitation centres provided data forpatients with inflammatory arthritis,Valnesfjord, Borger Bad, Skogli, Jeløya andTonsåsen rehabilitation centers and VikersundKurbad. In Norway patients older than 75 yearswere excluded from the project.

The Netherlands• In the Netherlands the day patient

multidisciplinary team care ward of theRheumatology Rehabilitation Clinic, theDepartment of Rheumatology, LeidenUniversity Medical Center participated (StudyII). Patients with a diagnosis of CIA with aspecified need for team-based rehabilitationwere referred to this outpatient rehabilitation.Length and content of rehabilitation wastailored to the patients’ needs and progress.

2. The Skåne health care register

In Sweden, all health care providers, public andprivate, are required to regularly provideinformation to the authorities for reimbur-sement purposes, which ensure high-qualityreporting. In Skåne, the southernmost countyof Sweden, all health care visits, inpatient andoutpatient, are registered in the Skåne HealthCare Register (SHCR). The unique personalidentification number facilitates registrationand analysis (Strömbeck et al. 2009). For allhealth care providers, date of visit andinformation on health care provider isrecorded. For public care diagnostic codes areregistered according to the International

Sofia Hagel 25

Classification of Diseases (ICD) 10 system(Study IV).

Vital events (date of birth and death, marriageand change of residential address) of allinhabitants of Sweden are registered in thenational population register by the personalidentification number. Information from thepopulation register is used for various reasonsincluding voting records and tax purposes.


Year

1996 1998 2000 2002 2004 2006 2008 2010 2012

Defining the cohort Study IV

Study III

Study II

Study I

Methods - Patients

The patients studied were 18 years or olderwith a diagnosis of inflammatory arthritis.Studies I, II and III were based on the outcomesof a group of patients included in arehabilitation programme at Rheuma Rehab, atthe Rheumatological Department in Lund,Skåne University Hospital. In Study II, patientsfrom the STAR-ETIC project in Sweden,Denmark, Norway and the Netherlands werealso included in the analysis. In Study IV thehealth care used by all patients diagnosed ashaving RA in Skåne during the years 1998-2001was analysed over the period 2001-2010. Someof these patients (n=17) were also included inthe cohorts in Studies I, II and III (Figure 4,Table 3).

In studies I, II and III patients wereconsecutively enrolled in the Rheuma Rehabprogramme in Lund between January 2002 andJune 2008, Figure 4. In Study II patients withCIA who completed a rehabilitation programmeat one of the sites for rehabilitation within the

STAR-ETIC project, and for whom PROs hadbeen filled out at admission and discharge wereincluded. For patients who had undergone tworehabilitation periods only data from the firstperiod were included. In Table 4 characteristicsof participants in the different Studies arepresented.

The health care utilization cohort in study IVwas based on data from the SHCR. Residentsof Skåne County, 18 years or older were definedas ‘cases’ if diagnosed with RA (ICD-10 codesM05, M06) on at least two separate visits to aphysician during the period 1998 to 2001,whereof at least once to a specialist inrheumatology or internal medicine (n=3977)(Table 4, Figure 4). Reference subjects (n=7954)were randomly matched by age, sex and area ofresidence.

In Figure 3 a description on how the StudiesI, II, III and IV cover context, structure, processand outcome according to the STAR-ETICframework is presented.

Figure 4. Timeline describing the studied periods in the Studies I, II, III and IV

Sofia Hagel 27

Table 4. Description patient characteristics in Studies I, II, III and IV

Study no No of included Mean age, Diagnosis Female/malepatients years (SD) RA/SpA/PsoA/Uns/JIA %

%

I 174 51 (12) 54/29/11/3/3 79/21II 731 54 (14) 59/29/12/0/0 67/33III 216 50 (12) 55/30/12/0/30 71/29IV 3977 63 (14) 100/0/0/0/0 74/26

Table 5. Presentation of outcome measures used in studies I, II and III and description of information retrievel.

Outcome measure EVALUATED IN STUDY Information retrieval used I II III Observed PRO

NHP emotion X X XNHP energy X X XNHP pain X X XNHP physical X X XNHP sleep X X XNHP social X X XSF-36 PF X X XSF-36 RP X X X XSF-36 BP X X X XSF-36 GH X X X XSF-36 VT X X X XSF-36 SF X X X XSF-36 RE X X X XSF-36 MH X X X XEQ-5D X X X XGeneral Health, VAS X X XPain, VAS/NRS X X X XFatigue, NRS X XHAQ X X X XASES X XHSCL-25 X XBASDAI X X XBASFI X X XBAS-G1, BAS-G2 X XBASMI X XAerobic capacity X X XShoulder arm hand test X XGrip strength, Grippit X XSOFI X X

Table 3. Relations between the different study cohorts

Studies No of patients No of patients No of patientsappearing in appearing in appearing intwo studies three studies four studies

I+II 30I+III 175II+III 38I+IV 80II+IV 35III+IV 91I+II+III 30II+III+IV 18I+II+III+IV 17


Outcome measures used forevaluation

The Nottingham Health Profile (NHP)

part I, was used in Studies I and III to evaluateHRQoL. The 38 items of this genericquestionnaire are divided into six subscales:emotional reactions (9 items), energy level (3items), pain (8 items), physical mobility (8items), sleep (5 items) and social isolation (5items). Each question can be answered ’yes’ or’no’, and the answer is weighted. Subscale andtotal scores can vary between 0, ‘no problems’,and 100, ‘all problems listed are present’(Frieset al. 1980; Ekdahl et al. 1988; Wiklund et al.1988; Wiklund et al. 1990; Houssien et al. 1997).

The Short Form 36 Health Survey (SF-36)

was used to evaluate HRQoL in Studies II andIII. This generic questionnaire of 36 itemscovers eight dimensions of health: physicalfunctioning (PF, 10 items), physical rolelimitations (RP, 4 items), bodily pain (BP, 2items), general health perceptions (GH, 6items), vitality (VT, 4 items), social functioning(SF, 2 items), emotional role limitations (RE, 3items) and mental health (MH, 5 items). Thescores range from 0 to 100 (worst to best)(Ware et al. 1992; Sullivan et al. 1998).

The Euroqol-5Dimensions (EQ-5D)

was used to evaluate HRQoL in Studies II andIII. The five questions of this genericquestionnaire encompass self-care, pain, usualactivities and psychological status. The resultis a value between 0 and 1 defining healthstatus (0=death, 1=full health) (Hurst et al.1997).

VAS general health

Visual analogue scales (VAS) were used toassess global health (0-100 mm/0-10 cm, best toworst) in Studies I, II and III.

VAS pain and VAS fatigue

Pain was evaluated in Studies I, II and III, using

VAS (0-100 mm/0-10 cm, best to worst) or anumerical rating scale (NRS) (Joos et al. 1991).

The level of fatigue according to definitionsgiven in each language was evaluated using anumeric rating scale (NRS, 0-10, best to worst).

HAQ

The patient-reported Stanford HealthAssessment Questionnaire (HAQ) was used inStudies I, II and III to evaluate physicalfunctioning. HAQ comprises 20 questionscovering eight areas of every day activities.The total score ranges from 0 to 3, best to worst(Fries et al. 1980; Ekdahl et al. 1988).

ASES

The Arthritis Self Efficacy Scale (ASES) wasused in study II to evaluate self-efficacy. Thetotal score ranges from 10-100 and in the Dutchversion total score ranges from 1 to 5, worst tobest (Bloch et al. 1989; Lorig et al. 1998b). Theparts for the evaluation of ‘pain’ (5 items) andof ‘other symptoms’ (4 items) were used.

HSCL-25

The Hopkins Symptom CheckList (HSCL-25)was used to evaluate mental wellbeing in StudyII. Twenty five items on mental wellbeing andthe total scores range from 0-4, best to worse(Nettelbladt et al. 1993).

BAS indices

In Studies I and III the self-administereddisease-specific instrument Bath AnkylosingSpondylitis (BAS) Indices for Function(BASFI) and for Disease Activity (BASDAI)were used to obtain information on functionalability and disease activity in patients withSpA including AS and PsA. The 10 items of theBASFI are answered on a VAS, one for eachquestion. The total score ranges from 0 to 10(best to worst) (Calin et al. 1994; Garrett et al.1994; Jones et al. 1996a; Cronstedt et al. 1999;Waldner et al. 1999). In Studies I and III theBath Indices for Global Health, using a VAS for

Methods - Outcome measures

Sofia Hagel 29

each item, measuring global health in theprevious week (BASG-1), and global healthduring the past 6 months (BASG-2) were alsoused in the SpA group, (0-10, best to worst)(Jones et al. 1996b).

The Bath Ankylosing Spondylitis MetrologyIndex (BASMI) provides a composite score ofobserved axial status, and was usedexclusively in the SpA group in Studies I andIII. A total score ranging from 0 to 10 (best toworst) is derived from five clinical measures oncervical and lumbar ROM (Jones et al. 1995).

Aerobic Capacity

In Studies I and III the aerobic capacity(maximal oxygen consumption, VO2max ) wasdetermined using an 8-minute, sub-maximaltreadmill walking test. Age, sex, self-selectedwalking speed (km/h), and working heart ratewere used to calculate the individual’s oxygenuptake, expressed as ml/kg/min (Ebbeling et al.1991; Minor et al. 1996). In Study I, the aerobiccapacity was classified according to four agegroups for women, and five age groups formen, making them comparable to the Astrandfitness categories: ‘Low’, ‘Fair’, ‘Average’,‘Good’ and ‘High’ (Astrand 1960).

The shoulder, arm and hand test

The shoulder, arm and hand test was used toevaluate the performance of the upperextremities (Bostrom et al. 1991), in Study III.Five different tasks were used to evaluate theROM, giving a total score ranging from 0 to 60(worst to best).

Grip strength

Grip strength was evaluated with the GRIPPITdynamometer with the patients seated in astandardized position, in Study III. Thepatients were instructed to press the handle ofthe instrument for 10 s with each hand. Themean strength of the left and right hand wasused (Nordenskiold et al. 1993; Lagerstrom etal. 1998).

SOFI

The Signals of Functional Impairment (SOFI)index was used to obtain a composite score of

observed function, in which the performanceof upper limbs (8 items) and lower limbs (4items) were evaluated. The total score rangesfrom 0 to 48 (best to worst) (Eberhardt et al.1988).This test was used exclusively in the PAgroup in Study III.

Psychometric properties

In Study III we wanted to study the validity ofa set of instruments in order to determinewhich outcome measures would provide thebest information for multidisciplinaryrehabilitation outcome in patients with CIA.We studied the content validity by linking theoutcome measures to the ICF components andalso assessed construct validity based onpredetermined hypotheses and responsiv-eness to change of the studied outcomemeasures.

Linkage to the ICF

We wanted to study and compare the relationto the ICF among the outcome measures used.We identified similarities and dissimilarities inthe ability to cover different aspects of healthand disease among the studied outcomemeasures. To aid in the difficult task ofdescribing evaluation and comparing outcomemeasures, linking rules have been developedto relate outcome measures to the ICF (Cieza etal. 2002; Stamm et al. 2004; Cieza et al. 2005b).All meaningful concepts of the questions,including the response options and examplesgiven in the outcome measure, should belinked to a specific ICF component accordingto the linking rules (Cieza et al. 2002; Cieza et al.2005b). Translation and identification of allmeaningful concepts of the studied outcomemeasures were linked to the most precise third-level ICF category. The representation of thecategories was then linked to the ICFcomponent(s): body function, body structureactivity and participation and environmentalfactors. Concepts addressing ‘health’, theoverall term defined by the components in theICF model, were linked to ‘health’. One co-author critically reviewed the initial linking and


after discussions and consensus the proposedlinking also was thoroughly reviewed by all co-authors. After discussion and revision thefinally linking was concluded.

Construct Validity

We also wanted to compare the relationshipbetween outcome measures used to evaluatesimilar aspects of health and disease.Analysis of construct validity can be used todetermine the relationship between outcomeinstruments. The analysis is based on linkingthe evaluated attribute or aspect of health tosome other attribute(s) by hypothesis. To fullyestablish construct validity it is necessary todefine high correlations (convergent validity)and low correlations (divergent validity). In ouranalysis convergent validity was defined as rs≥0.8 and divergent validity was defined as rs≤0.2(Terwee et al. 2007).

If construct validity is high the outcomemeasures analysed are expected to evaluatesimilar aspects of health and disease and arethus interchangeable. A high rs betweenoutcome measures could probably indicatethat the patient should better be spared fromthe effort with answering or be examined byboth questionnaires/outcome measures.

Responsiveness

Analysis of responsiveness evaluates if anoutcome measure is sensitive to change(Streiner et al. 1995). We wanted to compare themagnitude of change after the interventionbetween outcome measures used to evaluatesimilar aspects of health and disease. Thus wecalculated the standardized response mean(SRM) for each instrument or its subscales atthe end of rehabilitation and at the 12 monthfollow-up (Mokkink et al. 2010). Higher SRMscores indicate greater responsiveness tochange.

Minimal important difference

Measures for interpreting the improvement atthe individual level complementary to theimprovement on group level have beenpromoted by the OMERACT. Minimalimportant difference (MID) is one suggestedmeasure on clinical relevant change from thepatient’s perspective (Strand et al. 2011). InStudy II the MID was defined as a 0.05 changeof EQ-5D (Norman 2003; Strand et al. 2011) andthe MID of the SF-36 was calculated for eachsubscale to be 0.5 of the baseline standarddeviation (SD) (Norman 2003).

Another measure for individual improvementis the minimally clinically important difference(MCID), the smallest amount of changeconsidered clinically meaningful (Strand et al.2011). In Study I MCID in HAQ, BASDAI andBASFI was analysed (Kosinski et al. 2000;Pavy et al. 2005).


In study IV health care utilization was examinedfor a closed cohort of RA patients identified ascases by using the SHCR data for the period1998 to 2001. Using the population register wetraced residence status and survival for eachidentified subject (RA patient and referent) inthe period 2001-2010. By using the SHCR westudied the health care utilization for eachindividual. A subject was censored from thetime of eventual death or relocation. Weanalysed the annual mean number ofhospitalizations, in total and at rheumatology,internal medicine or orthopaedic clinics. Wealso analysed the annual mean number ofoutpatient clinic visits to physicians, nursesand PTs for each studied calendar year. Wefurther analysed the ratio of the mean numberof visits between the RA cohort and referencecohort for each calendar year, to evaluatepossible trends.

Sofia Hagel 31

Statistics

In Study I, the outcome over time was analysedusing paired t-tests, mean (±SD) with 99% CIs,where p-values less than 0.01 were consideredsignificant due to multiple testing. Pearsoncorrelation coefficients were used to assessthe association between different outcomemeasures.

In Study II, we used the analysis ofcovariance (ANCOVA) to analyse changes inEQ-5D and SF-36. The hypothesized predictorswere analysed in 4 different steps of the modelaccording to findings regarding multi-collinearity (Pearson correlation analysis). Astwo different versions of the ASES (10-100 and1-5) were used in this study, the ASES medianscore was used to dichotomize the ASES datain all countries before including the results inthe ANCOVA. The dependent variables, i.e. thechanges in the EQ-5D and the SF-36 subscales,were adjusted for their baseline values.ANCOVA was also used to study theinteraction between variables. Regressioncoefficient β-estimates (β-ests) werepresented, with 95% CIs.

In Study III construct validity was analysedby Spearman’s correlations (rs). We defined thenon-paramteric standardized response mean

(SRMnp) as the median change divided by theinterquartile range of change. The SRMnp is amore robust measure of responsiveness thanthe original SRM. The SRMnp can be expectedto produce smaller estimates, due to thedefinition. The magnitude of change due to theintervention (responsiveness) was classifiedas small (0-0.2), moderate (0.3-0.5) or large (>0.5) (Cohen 1977; Cohen 1988).

In study IV we calculated the ratio of themean number of visits between the RA cohortand the reference cohort for each calendar yearand performed test for trends across orderedgroups. Two tailed p-value of 0.05 or less wasconsidered statistically significant.

Ethics

Study I, II, III and IV had ethical approval. Inthe STAR-ETIC ethical approvals wereobtained in all participating countries.



In Study I, HRQoL, as evaluated by the NHP,statistically improved as a result of teamrehabilitation and remained statisticallyimproved for 12 months. In Study II, 46% of thepatients exhibited MID according to the EQ-5D; this finding being supported by thedifferent SF-36 subscales (positive MIDexhibited by 23-47% of the patients on thedifferent subscales). Being female, poorerpsychological wellbeing, experiencing morepain or fatigue at admission and the need tochange pharmacological treatment during therehabilitative intervention were found topredict improved HRQoL at discharge.

In Study III the EQ-5D and the SF-36instruments were found to cover the overallconstruct of health, according to the ICF. TheEQ-5D, NHP and SF-36 outcome measuresmainly covered body function, activity andparticipation. Environmental aspects were onlycovered by EQ-5D and the NHP (Table 6). Theconstruct validity of the HRQoL outcomemeasures was moderate (rs 0.6), however, thesubscales of the SF-36 had higher constructvalidity. The two measures of HRQoL outcome,EQ-5D and NHP, were comparable inresponsiveness over time (NHP SRMnp 0.6 and0.3, and EQ-5D SRMnp0.4 and 0.2).Responsiveness of the SF-36 subscales variedbetween 0 and 0.7.

Other aspects of health

General health

In Study I statistically significant improvementin general health was found at end ofrehabilitation and after 12 months. Whenlinking outcome measures to the ICF in StudyIII VAS general health and other outcomemeasures or subscales evaluating generalhealth (SF-36 GH, NHP, BAS-G1 and BAS-G2)were linked to the overall construct health(Table 6).

Pain

Pain measured by VAS improved significantlyafter 18 days of rehabilitation. However, theimprovement in perceived pain was no longersignificant after 4 months in the PA group orafter 12 months in the SpA group in Study I. Atgroup level pain measures in 731 patientshaving participated in rehabilitation pro-grammes in other Northern European countriessignificant improvements were found, Study II.Using MID analysis for SF-36 BP, 47% of thepatients exhibited a positive individual valueas a result of rehabilitation, while 16% exhibiteda negative MID, in Study II.

When linking pain according to the VAS tothe ICF it was found that it could only be linkedto the ICF component BF, the ‘b280’ - pain. Painmeasured using other outcome measures, NHPpain, SF-36 pain and BASDAI, was also linkedto the ICF component BF. However, NHP painand SF-36 BP also covered activity andparticipation (Table 6). Three out of 6 ques-tions of the BASDAI included pain estimatedon a VAS, and when analysed correlation to asingle measure of VAS pain was rs 0.8,indicating a strong relationship between thesetwo outcome measures (convergent validity).BASDAI showed a larger SRMnp after 18 daysof rehabilitation than did the VAS (0.8 vs. 0.5),while both measures had values of SRMnpclose to zero 12 months later (SRMnp 0.1 vs.0.2). BASDAI was found to be superior to asingle VAS pain measure in the evaluation ofshort-term outcome in patients with SpA. Noother measures of pain showed convergentvalidity according to the predefined hypo-theses. SF-36BP (SRMnp 0.5) and NHP pain(SRMnp 0.4) showed more consistentresponsiveness than VAS pain.

Fatigue

Experiencing more fatigue (β-est 0.02, p<0.001)at admission predicted a positive change inHRQoL according to EQ-5D. This wasconfirmed by similar findings in the analysis of

Results

Sofia Hagel 33

the SF-36 subscales in Study II. Higher fatigueat baseline was found to predict animprovement in HRQoL after completion of therehabilitation programme, as captured by theMH (β-est 0.8, p=0.004), SF (β-est 1.4, p<0.001),RE (β-est 1.5, p=0.038), VT (β-est 1.4, p<0.001)and BP (β-est 0.6, p=0.033) subscales.

Mental wellbeing

Poorer mental wellbeing, reflected by theHSCL-25, was found to predict improvedHRQoL, according to EQ-5D, Study III.Furthermore, statistically significant inter-actions were found between HSCL and co-morbidities (p=0.035), no comorbidities atbaseline (β-est -0.13), and comorbidities atbaseline (β-est 0.11). In the correspondinganalysis of HSCL-25 as a potential predictor ofimproved HRQoL as captured by the differentsubscales of the SF-36 HSCL at baseline wasfound to significantly predict improvement ofthe MH (β-est 8.9, p<0.001), SF (β-est 9.0p<0.001), RE (β-est 19.2, p<0.001), and VT (β-est 4.6, p=0.005) subscales. Interactions werefound not to be significant.

Self-efficacy

Experiencing low self-efficacy (below themedian) according to the ASES symptom scaleat the start of rehabilitation was found topredict an improvement in the MH (β-est 3.6,p=0.004), SF (β-est 4.2, p=0.029) and in REsubscales (β-est 6.6, p=0.049). Experiencinghigh self-efficacy (above the median) on theASES pain scale at the start of rehabilitationwas also found to predict improvement on thePF subscale (β-est 4.5, p=0.002) in Study II.

Physical functioning - patient reported

Patient-reported outcome measures onphysical functioning in Studies I, II and III.

A statistically significant improvement(p<0.01) was seen in physical functioning, asmeasured by the HAQ, in the PA group after 18days of rehabilitation, but not after 4 and 12months. The disease-specific instruments,BASDAI and BASFI, both showed statistically

significant changes in physical functioningand reached MCID at 4 months according toBASDAI and at 12 months according toBASFI.

When linking HAQ and BASFI to the ICFthey were found to cover similar components:activity, participation and environmentalfactors, and BASFI could also be linked to thecomponent of body function (Table 6).Furthermore, HAQ and BASFI were found tobe measures of related constructs since theircorrelation coefficient was 0.8. BASFI was themost responsive outcome measure out of thetwo. HAQ was found not to predict a change inHRQoL resulting from the team rehabilitationintervention when measured by EQ-5D or SF-36.

Physical functioning - observed

In Study III measures of the hand and arm wereanalysed separately from the measures ofspinal/axial mobility. All measures of hand andarm functioning (GRIPPIT, SOFI, Shoulder,hand and arm test) were linked to the ICFcomponent body function (Table 5). Constructvalidity was not seen between theseinstruments (rs= 0.3-0.7). The SOFI index wasfound to be a responsive measure of this typeof rehabilitation (SRMnp0.7 and 0.3) whileGRIPPIT and Shoulder, hand and arm test wereless responsive (SRMnp0.2-0.4).

The measure of axial ROM obtained withBASMI was also linked to the body functioncomponent of the ICF (Table 6). Wehypothesized that BASMI should have lowconstruct validity, and this hypothesis wasconfirmed by low correlations with the otheroutcome measures of observed physicalfunctioning (rs<0.2). The responsiveness washigh: SRMnp= 0.8 (at discharge) and 0.5 (after12 months).

Aerobic capacity

After 18 days of rehabilitation in Study I, thepatients had improved their aerobic capacitystatistically and clinically significantly. Atinclusion, <20% of the tested patients had an


%

0

10

20

30

40

50

60

70

PACol 2

In O ut 4 m onths 12 m onths

SpA

Figure 5. Percentage of patients in PA and SpA groups with aerobic capacity classified as average or more according to Astrand.

Table 6. Presentation of outcome measures used in studies I, II and III and description of linking to the ICF.

Outcomemeasure EVALUATED IN STUDY ICFused: I II III BF/BS Activity/ Environ- HEALTH

Participation mental

NHP emotion X X XNHP energy X X XNHP pain X X X XNHP physical X X X XNHP sleep X X XNHP social X X XSF-36 PF X X X XSF-36 RP X X X X XSF-36 BP X X X X XSF-36 GH X X X XSF-36 VT X X X X XSF-36 SF X X X X X XSF-36 RE X X X X X XSF-36 MH X X X XEQ-5D X X X X X X XGeneral Health, VAS X X XPain, VAS/NRS X X X XFatigue, NRS XHAQ X X X X XASES XHSCL-25 XBASDAI X XBASFI X X X X XBAS-G1, BAS-G2 X XBASMI X XAerobic capacity X X XShoulder arm hand test X XGrip strength, GRIPPIT X XSOFI X X X

PA

SpA

Sofia Hagel 35

of hospitalizations to an orthopaedic clinictended to decrease in both female (p=0.01) andmale RA patients (p=0.06)

The mean number of outpatient visits to aphysician decreased during follow-up infemale RA patients (from mean 9.9 visits in 2001to 8.7 visits in 2010, p=0.02). Male RA patientshad a similar pattern but not statisticallysignificant (p=0.19). The number of visitsgenerated by reference subjects remainedfairly stable during follow-up.

The mean number of visits to arheumatologist and/or specialist in internalmedicine or orthopaedic specialist,respectively, tended to decline in both femaleand male RA patients. While the annual meannumber of such visits in reference subjectsremained fairly stable.

The mean number of visits to a nurseincreased for both female (p=0.007) and male(p=0.04) RA patients, as well as for referencesubjects. However, the mean number of visitsto a nurse in rheumatology and/or in internalmedicine decreased during follow-up in femaleRA patients, from mean 1.3 in 2001 to 0.9 visitsin 2010 (p=0.007). The pattern in male RApatients was similar (p=0.01).

The number of visits to physiotherapistsdecreased from annual mean of 5.5 per femaleRA patient in 2001 to 3.4 in 2010 (p=0.003). Thepattern in male RA patients was similar(p=0.02).The physiotherapy utilization byreference subjects was relatively stable duringfollow-up.

aerobic capacity classified as ‘average orbetter’. Upon completing the rehabilitativeintervention, 41% (PA) and 54% (SpA) had anaerobic capacity that could be classified as‘average or better’ and the improvement wasmaintained over 12 months, Figure 5.

Aerobic capacity was linked to ICF bodyfunction in Study III (Table 6). Aerobiccapacity was found to have divergent validityto the other observed outcome measures (rs≥0.2) and it was also found to be a highlyresponsive observed outcome measure(SRMnp 1.1 and 1.2).


Over the 10 year study period 1417 (35.6%) ofthe included RA patients had died, and 89 hadrelocated out of the county. The annualmortality in the RA cohort ranged between 3.0to 4.3%. Of the 7954 matched referents, 1810(22.8%) had died by end of the study periodand 257 had relocated from Skåne County. Theannual mortality of the reference cohort rangedbetween 2.0 to 2.6%.

The annual mean number of hospitalizationswas relatively stable over time in both the RAcohort and the reference cohort, althoughthere was a statistically significant trend for anincrease over time in both female and malereference subjects (p=0.01).

The mean number of hospitalization at arheumatology or internal medicine clinic andorthopaedic clinic, respectively, was alsorelatively stable over time although the number


General discussion

Multidisciplinary team rehabilitation ofpatients with CIA was studied in this thesis,with the aim of analysing and presenting theoutcome. The psychometrics of establishedoutcome measures and their relation to the ICFwere also investigated. Also, a study wascarried out using data from health careregisters to evaluate changes over time inhealth care utilization in a closed cohort of RApatients over the past decade.

Theoretical frameworks for this thesis– the ICF and the model for structure,process and outcome

Although the research is clinically based andthe implications are for the clinical setting thediscourse for the work needs to be discussed.

The ICF was used as a theoretical frameworkfor the work presented in this thesis, togetherwith a model describing rehabilitation in termsof structure (the condition under which care isprovided), process (the health care activitiesconducted) and the outcome (the results fromthe rehabilitation) (Wade et al. 2000;Donabedian 2003; Wade 2005). Apart fromdescribing the different aspects of the ICF, andhaving focused on linking the instrumentsused to measure the outcome of teamrehabilitation to the ICF in Study III (Table 6),efforts were made to describe the structure, theprocess and the outcome. An attempt wasmade to explain structure and process in a localSwedish rehabilitation programme in Study Iwhere the outcome of team rehabilitation wasinvestigated. In Study II, predictors of changeor improvement in HRQoL were investigated indifferent settings. These two studies werecarried out by researchers within the STAR-ETIC project, and the common intention was toapply the structure–process–outcome modelto the studies generated from this project as awhole; one subject being analysed in as greatdetail as possible in each study. In Study III,

the psychometric properties of measures usedto evaluate the outcome of the Rheuma Rehabprogrammes in Lund were analysed. Certainaspects of rheumatological health care wereanalysed in Study IV by health care utilizationanalysis in terms of the frequency of visits of awell defined cohort of RA patients.

The ICF puts a focus on the impact ofdisability on activity and participation as moreimportant to the person affected than theiractual medical condition (World HealthOrganization 2012a). Thus, the ICF was foundto be a very useful framework, enabling us tobetter understand the properties of theoutcome measures used in team rehabilitation(Study III).

Team rehabilitation

The results of the studies included in thisthesis showed that team rehabilitation waseffective in improving HRQoL, aerobiccapacity and general health (Study I): threeimportant aspects when living with CIA. It wasalso found that among patients with CIAreferred for rehabilitation in four NorthernEuropean countries, women, thoseexperiencing poorer psychological wellbeing,or more pain or fatigue, benefited most in termsof improved HRQoL (Study II). Similar resultswere seen in EQ-5D and the subscales of SF-36.We also found that 46% (EQ-5D) and 23%-47%(SF-36 subscales) of the patients experiencedimproved HRQoL and exhibited positive MIDs.

Although our study design wasobservational, the findings contribute byproviding evidence of the important effects ofteam rehabilitation on aspects highly importantto the patient. Observational study design wasused in the studies on team rehabilitation (I, II,III).

Rehabilitation has been called ‘thearchetypical complex intervention’ (Wade2005), and the lack of evidence on the benefits

Sofia Hagel 37

of rehabilitation could be partly related to thedifficulties in describing this complexity. Thecomplexity is due to the combination of anumber of components in the rehabilitationprocess which may act independently andinterdependently (Campbell et al. 2007).Tailoring the interventions with regard to theneeds and goals of each patient also contri-butes to the complexity (Craig et al. 2008). Thevalue of the information obtained fromobservational studies has recently beenrecognized, and has been perceived to provideinformation from the ‘real world’ (vanVollenhoven et al. 2011). Team rehabilitationinterventions are complex and difficult to applyin randomized controlled trials models.According to PrvuBettger, ‘applying carefullydesigned, non-randomized studies canstrengthen the evidence to make moreconclusive statements about the effectivenessof rehabilitation services and outcomes’ (PrvuBettger et al. 2007).

Studies on the effects of multidisciplinaryteam rehabilitation in rheumatology (and onother aspects of rehabilitation) most ofteninclude some hundred patients at most. In therehabilitation context, the cohorts studied inthis thesis are large: n=174 (Study I), n=731(Study II) and n=215 (Study III). The STAR-ETIC cohort of 731 patients, representingdifferent rehabilitation programmes in fourNorthern European countries is, to the best ofour knowledge, a unique example ofcollaboration within Europe.

The patient’s perspective in rheumatologicalteam rehabilitation

In a recent Norwegian qualitative study, thefollowing conclusions were drawn regardingtargeted multidisciplinary rheumatologicalrehabilitation: (i) it has the potential foroutcomes of major personal impact, (ii)interventions should be tailored according tothe patient’s subjective perception ofchallenges, and (iii) a secure and supportiveenvironment, where patients are met withrespect and interest, is a crucial element (Dageret al. 2012). The findings of the STAR-ETICproject showed that most of the rehabilitation

programmes analysed in this thesis focus on,evaluate and incorporate patients’ goals andperceived challenges/impairments in theplanning of treatment, and interventions aretailored to the individual patient to varyingdegrees (Grotle et al. 2012).

Further steps for the development ofrheumatological team rehabilitation have beensuggested by Li (Li 2005).

1. The evaluation of less well-studiedinterventions.

2. Improved understanding of therelationships between rehabilitation-relatedvariables and disability.

3. Development and evaluation ofinnovative care models.

4. Design and evaluation of knowledgetransfer innovations.

According to Vliet Vlieland, the use ofadequate outcome measures, the enhancementof mutual communication, and furtherdefinition and extension of the role of thepatient in the team care process should also beincluded (Vliet Vlieland 2004). We consider thatwe have tried to target most of these aspects(1-3) in our intention to analyse the outcome ofteam rehabilitation, albeit with an obser-vational study design. Although team reha-bilitation is not the least well-studied areawithin rehabilitation, it is still hampered by alack of knowledge. Our finding of positivelong-term outcome from a well-describedrehabilitation programme (Study I), andinformation on which patients benefited mostfrom rehabilitation (Study II), can be related toitems 1 and 2 above. Our participation in theSTAR-ETIC project, where we described theoutcome of all participating sites andprogrammes in parallel to other authorsdescribing the structure and process from theparticipating sites, can not be regarded as‘development of innovative models’ (item 3),but it does provide valuable information ondifferent forms of rehabilitation programmesand their particular advantages. We alsoanalysed outcome measures relevant for theevaluation of team rehabilitation and tried toelucidate their applicability, relevance andvalidity.



HRQoL was found to improve significantly andto persist over time as a result ofmultidisciplinary rehabilitation interventions.Among chronic diseases, RA has been rated asone of those with the most serious detrimentaleffects on HRQoL (Strand et al. 2010). Reportson long-term improvement in HRQoL are rarewithin rheumatological rehabilitation.Previously in particular short-term improve-ments from team and rehabilitative inter-ventions had been described (Bulthuis et al.2007; Breedland et al. 2011) with few exceptions(Tijhuis et al. 2002; Tijhuis et al. 2003).

We also found that rehabilitativeinterventions were more beneficial in womenstruggling with more severe consequences oftheir disease.

It was also found that the instruments usedto evaluate HRQoL, i.e. EQ-5D, NHP and SF-36,were not interchangeable, and that themeasures studied were not very sensitive tochange over time. Interestingly, the short EQ-5D covered more aspects of health and diseasethan the more comprehensive instruments.

Physical functioning

Despite previously reported limitations of thesensitivity of the HAQ, the present studiesshowed an improvement after 18 days of team-based rehabilitation (Study I). HAQ was notfound to be predictive of changes in HRQoL(Study II), different from previous report on theability of HAQ to predict disability after 10years in cases of early arthritis (Lindqvist et al.2002). The HAQ and BASFI were comparablemeasures of functioning, and provide goodmeasures of the specific factors they areintended to evaluate (Study III).

Aerobic capacity

Aerobic capacity improved as a result of teamrehabilitation, and was sustained over 12months. Improved aerobic capacity afterrheumatological team rehabilitation has been

described in one study (Breedland et al. 2011)where the participants (n=24) were randomlyassigned to one of two groups, ’exercise‘ or’waiting list for control‘. The exercise groupfollowed an 8-week programme consisting of 3hours exercise, 2 days per week. Self-management education, for 60 minutes perweek, was also included in the programme. Thepatients were followed up after 22 weeks.Aerobic capacity was found to improve, whilehealth, self-efficacy and muscle strength didnot (Breedland et al. 2011). One contributingfactor to the sustained improvement seen inthe present work could be the individuallytailored plan on how to continue beeingphysically active after the rehabilitationprogramme. The plan was revised at eachfollow-up. Furthermore, the role of the follow-ups in motivating the patients seemedimportant. Improved level of aerobic capacitywas maintained indicating an increase inphysical activity in daily life. Improved aerobiccapacity among CIA patients may also helpprevent the development of cardiovasculardisease (Turesson et al. 2007).

The psychometric analysis showed thataerobic capacity was not captured by anyobserved outcome measure on physicalfunction used in Study II. It was also foundthat increased aerobic capacity was notcorrelated to energy level as measured by NHPin Study I. We believe that it is of utmostimportance to evaluate aerobic capacity inpatients with CIA. CIA patients, especiallythose with low aerobic capacity, should bemade more aware of the importance of physicalactivity, aerobic capacity and general health.

Psychometrics in the evaluation ofteam rehabilitation

When outcome measures used for theevaluation of team rehabilitation were linked tothe ICF, in Study III, the components mosthighly represented were body structure andbody function. The components of activityand participation were less well represented,while environmental aspects were only

Sofia Hagel 39

covered by one question in each out of threeoutcome measures.

When construct validity was evaluatedamong the outcome measures intended toevaluate similar aspects of health and disease,aerobic capacity was found to represent adifferent aspect. It was also found thatmeasures of HRQoL are not interchangeablewith regard to construct validity.

Aerobic capacity showed the highestresponsiveness of all outcome measuresanalysed.

All HRQoL outcome measures had low tomoderate responsiveness, although theshorter EQ-5D was found to cover all ICFcomponents. The BAS indices were found tobe of great value and preferable to othercomparable measures of disease activity,functioning and mobility when applicable (i.e.,in SpA patients).

Limitations of the present studies

We are well aware of the potential selectionbias of the participants in Studies I, II and IIIdue to differences in traditions and health care

systems in and between different countries.Patients referred to the Rheuma Rehabprogramme, and to other rehabilitationprogrammes and who completed therehabilitation programmes, could be moremotivated than other patients in similarsituation which might hamper thegeneralizability of the results.

Selection bias also adheres to our analysis ofhealth care utilization. In Study IV 3977 RApatients were included, meaning that at thebeginning of the study over 10 years not all ofthe total expected number of RA patientsresident in Skåne were included (Englund et al.2010). Since the cohort was defined by theirhealth care utilization during the inclusionperiod patients with established mild tomoderate disease could be underrepresented.Patients with more severe disease andcomorbidities consume more health care forsome periods but those with lethalcomplications will have a lower health careutilization.


presented. Patients with low physical activityimproved their physical activity during therehabilitation program with individual plans forphysical activity and also boostering followups. Thus, different forms of interventionswith individual and tailored planning onphysical activity and boostering could be morewidely used and evaluated.

- Aerobic capacity was not captured byany other of the outcome measures onobserved physical function or self reportedenergy in this thesis (Study III). Hence aerobiccapacity must be evaluated separately whenapplicable to the intervention performed.

- Outcome measures on evaluation ofHRQoL do not seem to be interchangeable inteam rehabilitation settings (Study III).Comparisons between outcomes of differentstudy settings should thus be evaluated withthis in mind.

- Health care utilization for RA patientsseems to decrease over time at least for certainhealth professionals. This has to be taken intoaccount in the planning of future care withinrheumatology.

Clinical implications

Pharmacological treatment has changedmarkedly over recent years with increasingcosts for biologic drugs in CIAs. As aconsequence in the priority discussions thebenefit of complex and costly interventionssuch as multidisciplinary team rehabilitationhas been questioned. However, all patients donot respond to pharmacological treatment, andpatients with longstanding disease havespecial needs not met by drugs only. It istherefore important to identify the patientswho will benefit most from this kind ofintervention.

- Patients suffering more severeconsequences (females with more fatigue, lesswellbeing and more pain) of the disease werefound to benefit most from team rehabilitationin our studies (I,II). This information could beuseful in selecting patients who would benefitfrom team rehabilitation.

- Aerobic capacity is an important aspectof health in CIA patients and an indicator of thelevel of physical activity for each individual. Inthis thesis evidence for improved aerobiccapacity maintained over longer time was

Sofia Hagel 41

Future perspectives

In the future a further development of modernindividualised and tailored team basedrehabilitation would be an important part oftreatment programmes for patients withchronic inflammatory arthritis. Aerobiccapacity and physical activity are importantaspects of future treatment and rehabilitation.Patients in need for complex interventions yetwith individual needs of care should bereferred to optimized team rehabilitationprogrammes. Further evaluation of different

models of team rehabilitation is needed,preferably also adding the societalperspective. This can be done by involving thepatients as well as different health careprofessionals and other stakeholders also fromother areas of expertise. Randomized con-trolled studies will be needed, but for furtherdescribing the broader perspective, notusually covered by RCTs also moreobservational studies will be needed in thefuture.


Conclusions

• Patients with CIA improve in HRQoL,aerobic capacity and general health by teambased rehabilitation with persisting improve-ments after twelve months.

• Female patients with more severeimpairment in pain, mental well-being andfatigue benefit most from team basedrehabilitation.

• Certain aspects of the ICF are wellcovered (body function and body structure)by the outcome measures used in routine carewhile the aspects of activity, participation andenvironmental aspects are less well covered.

• Different patient reported outcomemeasures such as SF-36, NHP and EQ-5D seemto measure different aspects of HRQoL and arenot interchangeable.

• Aerobic capacity is not related to ormeasured by other measures of physicalfunctioning used in team based rehabilitation.

• During the first decade of the twenty-first century, coinciding with increasing use ofearlier and more active RA treatment, includingbiological treatment, the overall inpatient andoutpatient health care utilization among RApatients has decreased compared to thegeneral population.

Sofia Hagel 43

Rehabilitering har sedan länge varit en viktigoch naturlig del av behandlingen för personermed reumatiska sjukdomar. I dennadoktorsavhandling om teambaserad reha-bilitering för personer med kroniska reumatiskaledsjukdomar ges en uppdatering avkunskapsläget liksom en historisk bakgrund.De vetenskapliga resultat som redovisas iavhandlingen visar i korthet på följande:

• Teambaserad reumatologisk specia-listrehabilitering ökar välbefinnande mätt somhälsorelaterad livskvalitet samt kondition,både kort- och långsiktigt.

• Med de skillnader och likheter i hurreumatologisk rehabilitering bedrivits i fyraolika länder och på olika centra i Europa har vifunnit att de patienter som genomgåttteamrehabilitering avsevärt ökat sitt välbe-finnande mätt som hälsorelaterad livskvalitet.De som förbättrades mest var kvinnor som vidrehabiliteringsperiodens början hade mer ont,var tröttare och mådde sämre.

• Välbefinnande mätt som hälsorelateradlivskvalitet bör utvärderas med sammafrågeformulär för att kunna jämföras.

• För att studera kondition krävs specifiktmått på syreupptagningsförmåga.

• Sjukvårdskonsumtionen har minskatbland personer med ledgångsreumatism underde senaste 10 åren.

Kronisk reumatisk ledsjukdom kan medförasmärta, stelhet, trötthet, ledförstörelse,minskad funktion i dagligt liv och arbetsliv förden som lever med sjukdomen. För mångapåverkas fysiskt, psykiskt och socialtvälbefinnande och livskvaliteten och denfysiska aktiviteten kan minska. Personer somlever med dessa sjukdomar kan också löpaökad risk för att drabbas av komplikationer ochandra sjukdomar. Under de senaste 20 åren harförståelsen för vad som orsakar ochunderhåller ledsjukdomen (inflammationen)ökat. Ett flertal nya läkemedel som enskilt eller ikombination effektivt minskar eller till och medbromsar den inflammatoriska aktiviteten har

tagits fram, vilket avsevärt förbättratlivssituation och framtidsutsikter för personermed kronisk reumatisk ledsjukdom. De nyaläkemedlen fungerar inte för alla som får dem.De som behandlas kan också ha levt med sinsjukdom under längre tid och/eller haft så högsjukdomsaktivitet att deras leder och andraorgan i kroppen destruerats eller märkts avsjukdomen, vilket inte förbättras lika mycket avläkemedelsbehandling.

Rehabilitering är ett viktigt komplement tillden medicinska behandlingen och definierassom “alla åtgärder av medicinsk, psykologisk,social och arbetslivsinriktad art som syftar tillatt hjälpa den sjuke att återfå bästa möjligaförmåga/funktion”. Rehabilitering av olikaaspekter av hälsa kan ske som enskildintervention dvs styrketräning, kondi-tionsträning, rörlighetsträning, smärtbe-handling, utprovning av hjälpmedel somenskild företeelse, levererad av en eller fleraprofessioner som arbetar enskilt. Då mångaolika aspekter av hälsa är påverkade ellersjukdomens inverkan är stor kan det uttryckassom att mer komplex problematik föreligger.Teamrehabilitering, dvs rehabilitering somutförs av ett team om fler än 2 personer medolika kompetens som arbetar kring ellertillsammans med varandra och tillsammans medpatienten är ett exempel på en sammansatt/komplex intervention. Vid teamrehabiliteringinom reumatologin kan läkare, sjuksköterska,sjukgymnast, arbetsterapeut och kurator ingå iteamet. Också ortoped, ortopedtekniker,psykolog samt dietist kan vara med. Team-rehabilitering har visats ha god effekt hospatienter med kronisk reumatologiskledsjukdom, men kan på grund av sinkomplexitet vara svår att utvärdera. Relativt fåundersökningar finns och det har också visatsig vara svårt att beskriva rehabiliteringen såatt den utifrån studien går att upprepa.

De delarbeten som presenteras i dennaavhandling har varit avsedda att studera ochbeskriva utfall av och utvärderingsmetodik vid

Summary in swedish – populärvetenskapligsammanfattning på svenska


teamrehabilitering av patienter med kroniskreumatisk ledsjukdom (delarbete I, II och III)samt att beskriva hur personer medledgångsreumatism använt sig av sjukvårdunder början av 2000 talet (delarbete IV).

Delarbete I är baserat på de174 patienter somgenomfört en rehabiliteringsperiod vid ReumaRehab i Lund januari 2002 till och med juni 2005.De genomgick 18 dagars rehabilitering förpatienter med ledgångsreumatism ellerreumatisk ryggsjukdom och undersöktes/fyllde i frågeformulär vid in- och utskrivning,samt 4 och 12 månader därefter. Patienternashälsorelaterade livskvalitet, kondition samtskattning av generell hälsa förbättrades ochhöll sig på en signifikant förbättrad nivå överhela undersökningsperioden, 12 månader. Vidinskrivning visade sig endast 16-17% avpatienterna ha medelgod kondition. Vidutskrivning hade 52-54% av patienternamedelgod kondition i relation till kön och ålder.Förbättringen kvarstod under den undersöktaperioden, vilket skulle kunna tyda på attpatienterna ökat sin fysiska aktivitet.

I delarbete II studeras patientdata frånrehabiliteringsprogram inom “ScandinavianTeam Arthritis Register-European TeamInitiative for Care” (STAR-ETIC projektet).Från Sverige deltog 3 enheter, i Norgebehandlade 11 enheter patienter med kroniskreumatisk ledsjukdom, från Danmark ochHolland deltog 1 enhet vardera. STAR-ETICprojektet startades för att undersöka strukturdvs hur olika teamrehabiliteringsprogram varutformade i de olika sjukvårdsystemen,process dvs hur rehabiliteringen utövadessamt utfallet dvs resultatet av de olikarehabiliteringsprogrammen. Gemensam upp-sättning av utvärderingsinstrument samtdatabas för inrapportering av data togs fram ibörjan av projektet. I delarbete II har 731patienter med kronisk reumatisk ledsjukdomsom avslutat rehabiliteringsperiod inom STAR-ETIC analyserats i försök att utröna vilkapatienter som har störst möjlighet att förbättrasin hälsorelaterade livskvalitet genom team-rehabilitering. Vi fann att de patienter som vidinskrivning rapporterat sämst psykologisktvälbefinnande, mer smärta och trötthet och var

kvinnor var de som förbättrades mest i sinhälsorelaterade livskvalitet. Båda deutvärderingsinstrument som använts förskattning av hälsorelaterad livskvalitet visadeöverensstämmande resultat. Vi undersökteockså om patienternas livskvalitet förbättratsså mycket att det påverkade deras vardag, dvs.var “kliniskt relevant” och fann att 46%respektive 23-47% av patienterna upplevde sågod förbättring att de uppnådde denna nivå.

I delarbete III studerades under-sökningsmetoder och utvärderingsformulärsom ofta används vid utvärdering av team-rehabilitering genom studie av informationlämnad av 216 patienter som genomförtrehabiliteringsperiod i Lund. Först under-söktes hur undersökningsmetoder och fråge-formulär täckte olika aspekter av hälsa genomatt länka dem till ett ramverk som tagits fram avWHO. Detta ramverk, InternationalClassification of Functioning, Disability andHealth (ICF), har tagits fram för att lättarebeskriva och jämföra undersökningsmetoder,frågeformulär, sjukvårdande verksamhet ochstudier. Sedan studerades hur under-sökningsmetoder och frågeformulär som äravsedda att utvärdera liknande aspekter avhälsa och sjukdom överensstämmer medvarandra. I en tredje analys undersöktes hurkänsliga undersökningsmetoder ochutvärderingsformulär är i att fånga förändring.Genom dessa analyser framkom att destuderade undersökningsmetoderna ochutvärderingsformulären väl täckte olikaaspekter av individens kroppsfunktion, attfärre frågor rörde aktiviteter i och utanförhemmet och olika sociala sammanhang somarbete och fritid. Minst berördes olika aspekterpå miljö, hemma, på arbetet och i samhället.Vidare framkom att kondition inte fångades avnågon av de andra utvärderingsmetoder somanvänts för att testa fysisk funktion,konditionstestet visade sig också vara mycketkänsligt för förändring. De särskildaundersökningsmetoder och utvärderingar somanvändes för att utvärdera reumatiskryggsjukdom visade sig fungera mycket braoch visade god känslighet för förändring. Avde frågeformulär som använts för att mäta

Sofia Hagel 45

hälsorelaterad livskvalitet täckte det kortasteom 5 frågor (EQ-5D) flest aspekter av hälsa,enligt ICF. Då formulären jämfördes framkomatt de inte rakt av går att ersätta med varandra,samt att de vid rehabilitering visade sig varalågt till måttligt känsliga för förändring.

I delarbete IV studerades hur personer medledgångsreumatism använt sig av sjukvård(sjukvårdskonsumtion) mellan åren 2001 tom2010. Genom att använda data från RegionSkånes Vårddatabaser identifierades patientersom vid två tillfällen diagnostiserats medledgångsreumatism i samband med läkarbesökmellan 1998 och 2001. Sedan analyseradesdessa patienters vårdkonsumtion 2001-2010.Via befolkningsregistret kunde referens-personer med samma ålders- och köns-sammansättning som patienterna identifieras.Dessa gruppers sjukvårdskonsumtionjämfördes. Totalt sett visade sigsjukvårdskonsumtionen bland patienternamed ledgångsreumatism minska i förhållandetill den bland normalbefolkningen. Patienternamed ledgångsreumatism sökte mer vård hosvissa typer av vårdpersonal somsjuksköterska. Vårdsökandet inom den

specialiserade reumatikervården minskade.Denna avhandling visar således att:- Teambaserad reumatologisk reha-

bilitering är fortsatt viktig för vissa personermed kronisk reumatisk ledsjukdom.

- Det är viktigt att fortsättningsvisindividualisera också rehabilitering så att desom behöver det får behandling avspecialistteam inom reumatologin.

- Test av kondition och träning avkondition är en viktig del som bör ingå ireumatologisk teamrehabilitering och dessutvärdering.

- Hälsorelaterad livskvalitet börutvärderas med jämförbara formulär också föratt underlätta jämförelse med andra typer avbehandling.

- Sjukvårdskonsumtionen bland patien-ter med ledgångsreumatism i Skåne har minskatde senaste 10 åren. Detta gäller både inne-liggande sjukhusvård och sjukvårdsbesök,framförallt till den specialiserade vården.

Fortsatt utveckling och utvärdering av denreumatologiska rehabiliteringen är en viktig deli framtidens vård för personer med kroniskreumatisk ledsjukdom.


Acknowledgements

This thesis is based on work carried out at theDepartment of Rheumatology, SkåneUniversity Hospital, Lund, at centresparticipating in the STAR-ETIC project inSweden, Norway Denmark and theNetherlands, and at the EPI-CENTRUM(former MORSE-project) in Lund. I greatlyappreciate all the efforts put into datacollection, retrieval and analysis, and wouldlike to express my gratitude to all thoseinvolved in these projects. In particular, Iwould like to express my sincere gratitude to:

All the patients, who generously and withgreat patience participated in the studies inSweden, Norway, Denmark and theNetherlands, and who answered all thequestionnaires and performed the tests. Thenthey returned and did it all again... They are oneof the cornerstones of this thesis.

The other three cornerstones of this thesisare Ingemar Petersson, my main supervisor,and Elisabet Lindqvist and Ann Bremander,my assistant supervisors – I was fortunateenough to have 3 supervisors along thissometimes bumpy road. Without you my‘rheumatological life’ would have been poorerand this thesis would not have been written.You are all great advocates for teamwork.

Ingemar – You introduced me to thethoughts on writing a thesis, and yourencouragement and our fruitful discussionshave helped me along the way. You are avisionary with the ability to spread yourenthusiasm and share your knowledge. Youhave helped me focus on the important issues,and your sincere interest and knowledge inteamwork and rehabilitation have beeninvaluable. Thank you for accompanying me,challengeing me and sometimes pushing meforward on this fascinating and developingjourney.

Elisabet – Thank you for all our fruitfuldiscussions, and for your constructive and

encouraging supervision, not only during mydoctoral studies but also as a Master’sstudent. Your ability to see the positiveaspects and to look at things from the oppositeperspective has challenged me and pushed meforward.

Ann – You have been invaluable in so manyways, wherof one was understanding‘physiotherapish’. We cogitated over the ICF,outcome measures and also STAR-ETIC datafor endless hours. Your gentle but positiveencouragement often led me to believe that Ihad thought of some of the important aspectsmyself.

Martin Englund – my co-author, for yourinvaluable advice in planning andaccomplishing Study IV and writing the paper.Thank you for sharing your extensiveepidemiological knowledge with me, and forgiving me the opportunity to work with datafrom the Skåne Health Care Register.

Jan-Åke Nilsson – my co-author, for yourinvaluable statistical advice. You have been mystatistical mentor, from my first stumbling stepswith SPSS to the last calculations in Study III.Thank you for your patience and for giving methe opportunity to learn by doing, under yourwatchful supervision.

Charlotte Bergknut – my co-author, forinvaluable help with the retrieval and analysisof register data in Study IV. Thank you also forsharing my enthusiasm when the results werefinally committed to paper.

All co-authors and co-workers in the STAR-ETIC project. Thea Vliet Vlieland, JoritMeesters, Kim Hörslev-Petersen, IngerHenriette Stovgard, Margreth Grotle, MariKlokkerud, Gerd-Jenny Aanerud, Kåre BirgerHagen, Ida Løchting, Ingvild Kjeken, BrittaStrömbeck, Birgitta Smedeby, SusanneJürgensen, Connie Ziegler, Ann, Elisabet andIngemar (and all participants at the centres whocollected the data) – thank you for fruitfulcollaboration, and for giving me theopportunity to work with the outcome aspect

Sofia Hagel 47

of our project. This is teamwork at its best –between professions, patients and countries.

Ido Leden – Thank you for persuading me tostart working in the field of rheumatology in1992. Your inspiring lectures and strong beliefin teamwork reinforced my reluctantlyawakened interest in this speciality that is nowso important to me.

Jan Theander and all former co-workers atthe Rheumatology Clinic in Kristianstad:Inger, Alice, Jenny, Annika, Karin, Ulla, Louis,Susanne, Katarina, Bitte and Majvor. Thanksto your knowledge and enthusiasm I was soonhooked on rheumatology, the specialty that Ihad previously shied away from.

Pierre Geborek – for helping me retrievedata from the Rheuma Rehab programmes, andfor encouraging discussions, not least on EQ-5D. You realised the benefits of computerisedregisters early on, thank you.

Tore Saxne and Frank Wollheim – forencouragement and positive support.

Ingrid Mattsson-Geborek – for invaluablehelp with the layout of this thesis and for yourpatience while working on it.

Marianne Månsson, Louise Bremander,Anna Lindqvist, Henrik Larsson, PiaAndersson and all others involved, forpatiently and skilfully recording the data fromthe patients.

All members of the Rheuma Rehab team:Malin Lanzinger, Lisa Mogard, EvaFredriksson, Siv Duckberg, Marie Andersson,Britt Marie Larsson, Kerstin Nived, IréneWikström, Marianne Månsson and CatarinaBengtsson – Thank you all for the wonderfulatmosphere, and for sharing the joy of work.

Christina Mo – for encouraging supportduring the last part of this work and for sharingmy interest in rehabilitation.

My physiotherapy colleagues at the Clinic ofRheumatology, Skånes Universitetssjukhus,Lotta K, Lotta R (in remembrance), Eva F, Lisa,Eva O, Maria, and Agneta for loyally sharingincreased workload when starting RheumaRehab and over the years. I still considermyself as part of the group.

All co-workers at the EPI-CENTRUM whoare too numerous to mention. Thank you all foryour good companionship and interesting

discussions in an inspiring multi-professionalspirit.

My ‘Red Room Comrades’ over the years –Ljuba, Jenny, Anna, Sara, Changchai. Wegradually got to know each other throughconcentrated silence and sometimes livelydiscussions.

Everyone at the Spenshult Research andDevelopment Center – Thank you for inspiringand fruitful discussions and for letting meshare your positive scientific atmosphere. Yourhospitality made me feel like one of the team.

Emma Haglund – for friendship and fruitfuldiscussions on doctoral studies and life.

Lotte Höjgård, Martin Zedig and MariaAndersson – for practical assistance andencouragement and for invaluable help withcomputer related issues.

Relatives and friends – for dealing with myabsences and for help and support, especially:

Club no. 9, Ladies’ Circle Sweden, all the‘girls’ in the LA book club and the girls in the‘EPI-Centrum/RC-Syd’ book club – ourmeetings forced me to focus on something elseand also to be social for a while.

The Svenssons – Ann-Sofie, Lasse, Stinaand Svante, for all the laughs and improvisedand planned suppers over the years.

Carina and Lars Björk – for proving thattrue friendship survives absence, even whenwe are separated by an ocean.

Eva and Mikael Kahlström – through goodtimes and bad we really came to recognise thetrue values in life.

Christian, Linda and little Alice – forreminding me about what is important in life. Ican assure you that the distance to Ystad willseem shorter now that I have completed thiswork.

Sonja and Bengt Hagel – my parents, for allyour help and support, to me and my familyover the years, and for always being there andbelieving in me.

Magnus – my unmarried man, without whosesupport D-day would never have come. Thankyou for your help and belief in me, yourencouragement and love.

Lovisa – my daughter, for keeping me backon track and being who you are. You and yourfather are what life is really about!


References

Ahlmen M, Svensson B, Albertsson K, Forslind K andHafstrom I. Influence of gender on assessments ofdisease activity and function in early rheumatoidarthritis in relation to radiographic joint damage.Ann Rheum Dis 2010;69(1): 230-233.

Ahlstrand I, Bjork M, Thyberg I, Borsbo B andFalkmer T. Pain and daily activities in RheumatoidArthritis. Disabil Rehabil 2012;34(15): 1245-1253.

Aissaoui N, Rostom S, Hakkou J, Berrada Ghziouel K,Bahiri R, Abouqal R and Hajjaj-Hassouni N. Fatiguein patients with ankylosing spondylitis: prevalenceand relationships with disease-specific variables,psychological status, and sleep disturbance.Rheumatol Int 2011. Epub 2011/04/26.

Alten R, Pohl C, Choy EH, Christensen R, Furst DE,Hewlett SE, Leong A, May JE, Sanderson TC, StrandV, et al. Developing a construct to evaluate flares inrheumatoid arthritis: a conceptual report of theOMERACT RA Flare Definition Working Group. JRheumatol 2011;38(8): 1745-1750.

Astrand I. Aerobic work capacity in men and womenwith special reference to age. Acta Physiol ScandSuppl. 1960;49(169): 1-92.

Atzeni F, Turiel M, Boccassini L, Sitia S, Tomasoni L,Battellino M, Marchesoni A, De Gennaro ColonnaV and Sarzi-Puttini P. Cardiovascular involvementin psoriatic arthritis. Reumatismo 2011;63(3): 148-154.

Baillet A, Zeboulon N, Gossec L, Combescure C, BodinLA, Juvin R, Dougados M and Gaudin P. Efficacy ofcardiorespiratory aerobic exercise in rheumatoidarthritis: meta-analysis of randomized controlledtrials. Arthritis Care Res (Hoboken) 2010;62(7):984-992.

Bakland G, Gran JT, Becker-Merok A, Nordvag BY andNossent JC. Work disability in patients withankylosing spondylitis in Norway. J Rheumatol2011;38(3): 479-484.

Bandura A. Social foundations of thought and action. Asocial cognitive theory. Enlewood Cliffs, NJ:Prentice-Hall. 1986

Bandura A. Health promotion by social cognitivemeans. Health Educ Behav 2004;31(2): 143-164.

Bansback NJ, Regier DA, Ara R, Brennan A, ShojaniaK, Esdaile JM, Anis AH and Marra CA. An overviewof economic evaluations for drugs used inrheumatoid arthritis : focus on tumour necrosisfactor-alpha antagonists. Drugs 2005;65(4): 473-496.

Bansback N, Marra CA, Finckh A and Anis A. Theeconomics of treatment in early rheumatoidarthritis. Best Pract Res Clin Rheumatol2009;23(1): 83-92.

Barlow J, Wright C, Sheasby J, Turner A andHainsworth J. Self-management approaches forpeople with chronic conditions: a review. PatientEduc Couns 2002;48(2): 177-187.

Barton JL, Imboden J, Graf J, Glidden D, Yelin EH andSchillinger D. Patient-physician discordance inassessments of global disease severity in rheumatoidarthritis. Arthritis Care Res (Hoboken) 2010;62(6):857-864.

Bingham CO, 3rd, Alten R, Bartlett SJ, Bykerk VP,Brooks PM, Choy E, Christensen R, Furst DE,Hewlett SE, Leong A, et al. Identifying preliminarydomains to detect and measure rheumatoid arthritisflares: report of the OMERACT 10 RA FlareWorkshop. J Rheumatol 2011;38(8): 1751-1758.

Bloch DA, Lorig K, Brown BW, Jr. and Moses LE.Parametric and nonparametric analyses of the samedata. Soc Sci Med 1989;29(2): 259-260.

Boehncke WH, Gladman DD and Chandran V.Cardiovascular comorbidities in psoriasis andpsoriatic arthritis: pathogenesis, consequences forpatient management, and future research agenda: areport from the GRAPPA 2009 annual meeting. JRheumatol 2011;38(3): 567-571.

Boonen A, Maetzel A, Drummond M, Suarez-AlmazorM, Harrison M, Welch V and Tugwell PS. TheOMERACT Initiative. Towards a referenceapproach to derive QALY for economic evaluationsin rheumatology. J Rheumatol 2009a;36(9): 2045-2049.

Boonen A, Stucki G, Maksymowych W, Rat AC,Escorpizo R and Boers M. The OMERACT-ICFReference Group: integrating the ICF into theOMERACT process: opportunities and challenges. JRheumatol 2009b;36(9): 2057-2060.

Boonen A, Braun J, van der Horst Bruinsma IE, HuangF, Maksymowych W, Kostanjsek N, Cieza A, StuckiG and van der Heijde D. ASAS/WHO ICF Core Setsfor ankylosing spondylitis (AS): how to classify theimpact of AS on functioning and health. Ann RheumDis 2010;69(1): 102-107.

Bostrom C, Harms-Ringdahl K and Nordemar R.Clinical reliability of shoulder function assessmentin patients with rheumatoid arthritis. Scand JRheumatol 1991;20(1): 36-48.

Brattström M and Berglund K. Ambulantrehabilitation of patients with chronic rheumaticdisease. A fourteen-month clinical trial. Apreliminary report. Scand J Rehabil Med 1970;2(4):133-142.

Brattström M, Claesson K, Eklöf M, Hansson L andKollberg B. [The rheumatism dispensary inspecialised outpatient care of rheumatoid patients].Läkartidningen 1977;74(50): 4501-4503.

Brattström M, Claesson K, Eklöf M and Malcus P.[The instruction of patients at the rheumatismdispensary in Lund]. Läkartidningen 1980;77(40):3509-3511.

Sofia Hagel 49

Braun J, van den Berg R, Baraliakos X, Boehm H,Burgos-Vargas R, Collantes-Estevez E, Dagfinrud H,Dijkmans B, Dougados M, Emery P, et al. 2010update of the ASAS/EULAR recommendations forthe management of ankylosing spondylitis. AnnRheum Dis 2011;70(6): 896-904.

Breedland I, van Scheppingen C, Leijsma M, Verheij-Jansen NP and van Weert E. Effects of a group-based exercise and educational program on physicalperformance and disease self-management inrheumatoid arthritis: a randomized controlled study.Phys Ther 2011;91(6): 879-893.

Bremander A, Petersson IF, Bergman S and Englund M.Population-based estimates of commoncomorbidities and cardiovascular disease inankylosing spondylitis. Arthritis Care Res(Hoboken) 2011;63(4): 550-556.

Brionez TF, Assassi S, Reveille JD, Learch TJ,Diekman L, Ward MM, Davis JC, Jr., Weisman MHand Nicassio P. Psychological correlates of self-reported functional limitation in patients withankylosing spondylitis. Arthritis Res Ther2009;11(6): R182.

Brodin N, Eurenius E, Jensen I, Nisell R and Opava CH.Coaching patients with early rheumatoid arthritis tohealthy physical activity: a multicenter,randomized, controlled study. Arthritis Rheum2008;59(3): 325-331.

Buchbinder R, Bombardier C, Yeung M and Tugwell P.Which outcome measures should be used inrheumatoid arthritis clinical trials? Clinical andquality-of-life measures’ responsiveness totreatment in a randomized controlled trial. ArthritisRheum 1995;38(11): 1568-1580.

Bulthuis Y, Drossaers-Bakker KW, Taal E, Rasker J,Oostveen J, van’t Pad Bosch P, Oosterveld F andvan de Laar M. Arthritis patients show long-termbenefits from 3 weeks intensive exercise trainingdirectly following hospital discharge.Rheumatology (Oxford) 2007;46(11): 1712-1717.

Cairns AP and McVeigh JG. A systematic review of theeffects of dynamic exercise in rheumatoid arthritis.Rheumatol Int 2009;30(2): 147-158.

Calin A, Garrett S, Whitelock H, Kennedy LG, O’HeaJ, Mallorie P and Jenkinson T. A new approach todefining functional ability in ankylosingspondylitis: the development of the BathAnkylosing Spondylitis Functional Index. JRheumatol 1994;21(12): 2281-2285.

Camacho EM, Verstappen SM, Lunt M, Bunn DK andSymmons DP. Influence of age and sex onfunctional outcome over time in a cohort ofpatients with recent-onset inflammatorypolyarthritis: results from the Norfolk ArthritisRegister. Arthritis Care Res (Hoboken)2011;63(12): 1745-1752.

Campbell NC, Murray E, Darbyshire J, Emery J,Farmer A, Griffiths F, Guthrie B, Lester H, Wilson Pand Kinmonth AL. Designing and evaluatingcomplex interventions to improve health care. Bmj2007;334(7591): 455-459.

Carneiro C, Chaves M, Verardino G, Drummond A,Ramos-e-Silva M and Carneiro S. Fatigue inpsoriasis with arthritis. Skinmed 2011;9(1): 34-37.

Carr A, Hewlett S, Hughes R, Mitchell H, Ryan S, CarrM and Kirwan J. Rheumatology outcomes: thepatient’s perspective. J Rheumatol 2003;30(4):880-883.

Carter S and Lories RJ. Osteoporosis: a paradox inankylosing spondylitis. Curr Osteoporos Rep2011;9(3): 112-115.

Cartmill C, Soklaridis S and David Cassidy J.Transdisciplinary teamwork: the experience ofclinicians at a functional restoration program. JOccup Rehabil 2011;21(1): 1-8.

Cieza A, Brockow T, Ewert T, Amman E, Kollerits B,Chatterji S, Ustun TB and Stucki G. Linking health-status measurements to the internationalclassification of functioning, disability and health. JRehabil Med 2002;34(5): 205-210.

Cieza A and Stucki G. Understanding functioning,disability, and health in rheumatoid arthritis: thebasis for rehabilitation care. Curr Opin Rheumatol2005a;17(2): 183-189.

Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun Band Stucki G. ICF linking rules: an update based onlessons learned. J Rehabil Med 2005b;37(4): 212-218.

Cohen J. Statistical Power Analysis for theBehavioural Sciences. New York, NY, AcademicPress. 1977.

Cohen J, Ed. Statistical Power Analysis for theBehavioral Sciences Lawrence Erlbaum Associates.1988.

Craig P, Dieppe P, Macintyre S, Michie S, Nazareth Iand Petticrew M. Developing and evaluatingcomplex interventions: the new Medical ResearchCouncil guidance. Bmj 2008;337: a1655.

Cronstedt H, Waldner A and Stenstrom CH. TheSwedish version of the Bath ankylosing spondylitisfunctional index. Reliability and validity. Scand JRheumatol Suppl. 1999;111: 1-9.

Cuperus N, Hoogeboom TJ, Neijland Y, van den EndeCH and Keijsers N. Are people with rheumatoidarthritis who undertake activity pacing at risk ofbeing too physically inactive? Clin Rehabil 2012.Epub 2012/02/14

Dafydd M, Whitaker IS, Murison MS and Boyce DE.Change in operative workload for rheumatoiddisease of the hand: 1,109 procedures over 13 years.J Plast Reconstr Aesthet Surg 2012;65(6): 800-803.

Dager TN, Kjeken I, Fjerstad E and Hauge MI. It isabout taking grips and not let myself be ravaged bymy body”: A qualitative study of outcomes from in-patient multidisciplinary rehabilitation for patientswith chronic rheumatic diseases. Disabil Rehabil2012;34(11): 910-916.

Dagfinrud H, Mengshoel AM, Hagen KB, Loge JH andKvien TK. Health status of patients withankylosing spondylitis: a comparison with thegeneral population. Ann Rheum Dis 2004a;63(12):1605-1610.

Dagfinrud H, Kvien TK and Hagen KB. Physiotherapyinterventions for ankylosing spondylitis. CochraneDatabase Syst Rev 2004b;(4): CD002822.


Dagfinrud H, Kjeken I, Mowinckel P, Hagen KB andKvien TK. Impact of functional impairment inankylosing spondylitis: impairment, activitylimitation, and participation restrictions. JRheumatol 2005a;32(3): 516-523.

Dagfinrud H, Vollestad NK, Loge JH, Kvien TK andMengshoel AM. Fatigue in patients with ankylosingspondylitis: A comparison with the generalpopulation and associations with clinical and self-reported measures. Arthritis Rheum 2005b;53(1):5-11.

Dagfinrud H, Halvorsen S, Vollestad NK, NiedermannK, Kvien TK and Hagen KB. Exercise programs intrials for patients with ankylosing spondylitis: dothey really have the potential for effectiveness?Arthritis Care Res (Hoboken) 2011;63(4): 597-603.

Dandorfer SW, Rech J, Manger B, Schett G andEnglbrecht M. Differences in the Patient’s and thePhysician’s Perspective of Disease in PsoriaticArthritis. Semin Arthritis Rheum 2012. Epub 2012/03/20.

de Buck PD, le Cessie S, van den Hout WB, Peeters AJ,Ronday HK, Westedt ML, Breedveld FC and VlietVlieland TP. Randomized comparison of amultidisciplinary job-retention vocationalrehabilitation program with usual outpatient care inpatients with chronic arthritis at risk for job loss.Arthritis Rheum 2005;53(5): 682-690.

de Wit MP, Smolen JS, Gossec L and van der HeijdeDM. Treating rheumatoid arthritis to target: thepatient version of the internationalrecommendations. Ann Rheum Dis 2011a;70(6):891-895.

de Wit MP, Berlo SE, Aanerud GJ, Aletaha D, BijlsmaJW, Croucher L, Da Silva JA, Glusing B, Gossec L,Hewlett S, et al. European League AgainstRheumatism recommendations for the inclusion ofpatient representatives in scientific projects. AnnRheum Dis 2011b;70(5): 722-726.

Dieppe P. Complex interventions. MusculoskeletalCare 2004;2(3): 180-186.

Donabedian A. An introduction to quality assurance inhealth care New York Oxford University Press.2003.

Ebbeling CB, Ward A, Puleo EM, Widrick J and RippeJM. Development of a single-stage submaximaltreadmill walking test. Med Sci Sports Exerc1991;23(8): 966-973.

Eberhardt KB, Svensson B and Mortiz U. Functionalassessment of early rheumatoid arthritis. Br JRheumatol 1988;27(5): 364-371.

Eberhardt KB, Rydgren LC, Pettersson H andWollheim FA. Early rheumatoid arthritis—onset,course, and outcome over 2 years. Rheumatol Int1990;10(4): 135-142.

Ekdahl C, Eberhardt K, Andersson SI and Svensson B.Assessing disability in patients with rheumatoidarthritis. Use of a Swedish version of the StanfordHealth Assessment Questionnaire. Scand JRheumatol 1988;17(4): 263-271.

Ekdahl C, Andersson SI and Svensson B. Musclefunction of the lower extremities in rheumatoidarthritis and osteoarthrosis. A descriptive study ofpatients in a primary health care district. J ClinEpidemiol 1989;42(10): 947-954.

Ekdahl C and Broman G. Muscle strength, endurance,and aerobic capacity in rheumatoid arthritis: acomparative study with healthy subjects. AnnRheum Dis 1992;51(1): 35-40.

El Maghraoui A. Extra-articular manifestations ofankylosing spondylitis: prevalence, characteristicsand therapeutic implications. Eur J Intern Med2011;22(6): 554-560.

Emery P, Kosinski M, Li T, Martin M, Williams GR,Becker JC, Blaisdell B, Ware JE, Jr., Birbara C andRussell AS. Treatment of rheumatoid arthritispatients with abatacept and methotrexatesignificantly improved health-related quality of life.J Rheumatol 2006;33(4): 681-689.

Encyclopaedia Britannica. 2012.Englund M, Joud A, Geborek P, Felson DT, Jacobsson

LT and Petersson IF. Prevalence and incidence ofrheumatoid arthritis in southern Sweden 2008 andtheir relation to prescribed biologics. Rheumatology(Oxford) 2010;49(8): 1563-1569.

Eurenius E and Stenstrom CH. Physical activity,physical fitness, and general health perceptionamong individuals with rheumatoid arthritis.Arthritis Rheum 2005;53(1): 48-55.

Eurenius E, Brodin N, Lindblad S and Opava CH.Predicting physical activity and general healthperception among patients with rheumatoidarthritis. J Rheumatol 2007;34(1): 10-15.

Fautrel B, Verstappen SM and Boonen A. Economicconsequences and potential benefits. Best Pract ResClin Rheumatol 2011;25(4): 607-624.

Fries JF, Spitz P, Kraines RG and Holman HR.Measurement of patient outcome in arthritis.Arthritis Rheum 1980;23(2): 137-145.

Gabriel SE. Why do people with rheumatoid arthritisstill die prematurely? Ann Rheum Dis 2008a;67Suppl 3: iii30-34.

Gabriel SE. Cardiovascular morbidity and mortality inrheumatoid arthritis. Am J Med 2008b;121(10Suppl 1): S9-14.

Gafvels C, Hagerstrom M, Nordmark B and WandellPE. Psychosocial problems among newly diagnosedrheumatoid arthritis patients. Clin Rheumatol2012;31(3): 521-529.

Galloway MT and Jokl P. The role of exercise in thetreatment of inflammatory arthritis. Bull RheumDis 1993;42(1): 1-4.

Garber CE, Blissmer B, Deschenes MR, Franklin BA,Lamonte MJ, Lee IM, Nieman DC and Swain DP.American College of Sports Medicine positionstand. Quantity and quality of exercise fordeveloping and maintaining cardiorespiratory,musculoskeletal, and neuromotor fitness inapparently healthy adults: guidance for prescribingexercise. Med Sci Sports Exerc 2011;43(7): 1334-1359.

Sofia Hagel 51

Garip Y, Eser F, Aktekin LA and Bodur H. Fatigue inrheumatoid arthritis: association with severity ofpain, disease activity and functional status. ActaReumatol Port 2011;36(4): 364-369.

Garrett S, Jenkinson T, Kennedy LG, Whitelock H,Gaisford P and Calin A. A new approach to definingdisease status in ankylosing spondylitis: the BathAnkylosing Spondylitis Disease Activity Index. JRheumatol 1994;21(12): 2286-2291.

Geborek P, Crnkic M, Petersson IF and Saxne T.Etanercept, infliximab, and leflunomide inestablished rheumatoid arthritis: clinical experienceusing a structured follow up programme in southernSweden. Ann Rheum Dis 2002;61(9): 793-798.

Gladman DD, Mease PJ, Krueger G, van der HeidjeDM, Antoni C, Helliwell PS, Kavanaugh AF, Nash P,Ritchlin CT, Strand CV and Taylor W. Outcomemeasures in psoriatic arthritis. J Rheumatol2005;32(11): 2262-2269.

Gladman DD, Mease PJ, Healy P, Helliwell PS,Fitzgerald O, Cauli A, Lubrano E, Krueger GG, vander Heijde D, Veale DJ, et al. Outcome measures inpsoriatic arthritis. J Rheumatol 2007a;34(5): 1159-1166.

Gladman DD, Mease PJ, Strand V, Healy P, HelliwellPS, Fitzgerald O, Gottlieb AB, Krueger GG, Nash P,Ritchlin CT, et al. Consensus on a core set ofdomains for psoriatic arthritis. J Rheumatol2007b;34(5): 1167-1170.

Gladman DD, Ang M, Su L, Tom BD, Schentag CT andFarewell VT. Cardiovascular morbidity in psoriaticarthritis. Ann Rheum Dis 2009;68(7): 1131-1135.

Grotle M, Klokkerud M, Kjeken I, Bremander A, HagelS, Strombeck B, Hørslev-Petersen K, Meesters J,Vliet Vlieland T and Hagen K. What’s in the blackbox of arthritis rehabilitation? Results frompatients with inflammatory arthritis in northernEurope, the STAR-ETIC collaboration. Journal ofRehabilitation Medicine. 2012. Submitted.

Guillemin F, Iversen MD, Rat AC, Osborne R andPetersson IF. Nonpharmacologic interventionsneed outcomes for evaluating complexinterventions in rheumatic diseases. J Rheumatol2011;38(8): 1803-1805.

Gülfe A, Kristensen LE, Saxne T, Jacobsson LT,Petersson IF and Geborek P. Rapid and sustainedhealth utility gain in anti-tumour necrosis factor-treated inflammatory arthritis: observational dataduring 7 years in southern Sweden. Ann Rheum Dis2010;69(2): 352-357.

Haglund E, Bremander AB, Petersson IF, Strombeck B,Bergman S, Jacobsson LT, Turkiewicz A, Geborek Pand Englund M. Prevalence of spondyloarthritis andits subtypes in southern Sweden. Ann Rheum Dis2011;70(6): 943-948.

Hallert E, Thyberg I, Hass U, Skargren E and Skogh T.Comparison between women and men with recentonset rheumatoid arthritis of disease activity andfunctional ability over two years (the TIRAproject). Ann Rheum Dis 2003;62(7): 667-670.

Hallert E, Bjork M, Dahlstrom O, Skogh T andThyberg I. Disease activity and disability in womenand men with early rheumatoid arthritis: An 8-yearfollow-up of the Swedish TIRA project. ArthritisCare Res (Hoboken) 2012. Epub 2012/03/07.

Halvorsen S, Vollestad NK, Fongen C, Provan SA,Semb AG, Hagen KB and Dagfinrud H. Physicalfitness in patients with ankylosing spondylitis:comparison with population controls. Phys Ther2012;92(2): 298-309.

Hammond A, Lincoln N and Sutcliffe L. A crossovertrial evaluating an educational-behavioural jointprotection programme for people with rheumatoidarthritis. Patient Educ Couns 1999;37(1): 19-32.

Hammond A. Rehabilitation in rheumatoid arthritis: acritical review. Musculoskeletal Care 2004a;2(3):135-151.

Hammond A and Freeman K. The long-term outcomesfrom a randomized controlled trial of aneducational-behavioural joint protectionprogramme for people with rheumatoid arthritis.Clin Rehabil 2004b;18(5): 520-528.

Heiberg T and Kvien TK. Preferences for improvedhealth examined in 1,024 patients with rheumatoidarthritis: pain has highest priority. Arthritis Rheum2002;47(4): 391-397.

Hekmat K, Jacobsson L, Nilsson JA, Petersson IF,Robertsson O, Garellick G and Turesson C. Decreasein the incidence of total hip arthroplasties inpatients with rheumatoid arthritis—results from awell defined population in south Sweden. ArthritisRes Ther 2011;13(2): R67.

Helliwell PS, O’Hara M, Holdsworth J, Hesselden A,King T and Evans P. A 12-month randomizedcontrolled trial of patient education on radiographicchanges and quality of life in early rheumatoidarthritis. Rheumatology (Oxford) 1999;38(4): 303-308.

Henchoz Y, Bastardot F, Guessous I, Theler JM, DudlerJ, Vollenweider P and So A. Physical activity andenergy expenditure in rheumatoid arthritis patientsand matched controls. Rheumatology (Oxford)2012. Epub 2012/04/28.

Hewlett S, Carr M, Ryan S, Kirwan J, Richards P, CarrA and Hughes R. Outcomes generated by patientswith rheumatoid arthritis: how important are they?Musculoskeletal Care 2005a;3(3): 131-142.

Hewlett S, Cockshott Z, Byron M, Kitchen K, TiplerS, Pope D and Hehir M. Patients’ perceptions offatigue in rheumatoid arthritis: overwhelming,uncontrollable, ignored. Arthritis Rheum2005b;53(5): 697-702.

Hewlett S, Ambler N, Almeida C, Cliss A, Hammond A,Kitchen K, Knops B, Pope D, Spears M, Swinkels Aand Pollock J. Self-management of fatigue inrheumatoid arthritis: a randomised controlled trialof group cognitive-behavioural therapy. AnnRheum Dis 2011;70(6): 1060-1067.


Hewlett S, Sanderson T, May J, Alten R, Bingham CO,3rd, Cross M, March L, Pohl C, Woodworth T andBartlett SJ. ‘I’m hurting, I want to kill myself’:rheumatoid arthritis flare is more than a high jointcount—an international patient perspective onflare where medical help is sought. Rheumatology(Oxford) 2012;51(1): 69-76.

Houssien DA, McKenna SP and Scott DL. TheNottingham Health Profile as a measure of diseaseactivity and outcome in rheumatoid arthritis. Br JRheumatol. 1997;36(1): 69-73.

Hurkmans E, van der Giesen FJ, Vliet Vlieland TP,Schoones J and Van den Ende EC. Dynamic exerciseprograms (aerobic capacity and/or muscle strengthtraining) in patients with rheumatoid arthritis.Cochrane Database Syst Rev 2009;(4): CD006853.

Hurkmans EJ, Jones A, Li LC and Vliet Vlieland TP.Quality appraisal of clinical practice guidelines onthe use of physiotherapy in rheumatoid arthritis: asystematic review. Rheumatology (Oxford)2011a;50(10): 1879-1888.

Hurkmans EJ, de Gucht V, Maes S, Peeters AJ, RondayHK and Vliet Vlieland TP. Promoting physicalactivity in patients with rheumatoid arthritis:rheumatologists’ and health professionals’ practiceand educational needs. Clin Rheumatol2011b;30(12): 1603-1609.

Hurst NP, Kind P, Ruta D, Hunter M and Stubbings A.Measuring health-related quality of life inrheumatoid arthritis: validity, responsiveness andreliability of EuroQol (EQ-5D). Br J Rheumatol1997;36(5): 551-559.

Husted JA, Thavaneswaran A, Chandran V, Eder L,Rosen CF, Cook RJ and Gladman DD.Cardiovascular and other comorbidities in patientswith psoriatic arthritis: a comparison with patientswith psoriasis. Arthritis Care Res (Hoboken)2011;63(12): 1729-1735.

Iversen MD and Petersson IF. Design issues andpriorities in team and nonpharmacological arthritiscare research. J Rheumatol 2006;33(9): 1904-1907.

Iversen MD. CARE V series: integrating patientviewpoints into health care practice and research.Phys Ther 2009;89(12): 1266-1268.

Jacobsson LT, Frithiof M, Olofsson Y, Runesson I,Strombeck B and Wikstrom I. Evaluation of astructured multidisciplinary day care program inrheumatoid arthritis. A similar effect in newlydiagnosed and long-standing disease. Scand JRheumatol 1998;27(2): 117-124.

Janse van Rensburg DC, Ker JA, Grant CC and FletcherL. Effect of exercise on cardiac autonomic functionin females with rheumatoid arthritis. ClinRheumatol 2012. Epub 2012/04/25.

Jesmin S, Thind A and Sarma S. Does team-basedprimary health care improve patients’ perceptionof outcomes? Evidence from the 2007-08 CanadianSurvey of Experiences with Primary Health. HealthPolicy 2012;105(1): 71-83.

Jones SD, Porter J, Garrett SL, Kennedy LG,Whitelock H and Calin A. A new scoring system forthe Bath Ankylosing Spondylitis Metrology Index(BASMI). J Rheumatol 1995;22(8): 1609.

Jones SD, Calin A and Steiner A. An update on the BathAnkylosing Spondylitis Disease Activity andFunctional Indices (BASDAI, BASFI): excellentCronbach’s alpha scores. J Rheumatol 1996a;23(2):407.

Jones SD, Steiner A, Garrett SL and Calin A. The BathAnkylosing Spondylitis Patient Global Score (BAS-G). Br J Rheumatol 1996b;35(1): 66-71.

Joos E, Peretz A, Beguin S and Famaey JP. Reliabilityand reproducibility of visual analogue scale andnumeric rating scale for therapeutic evaluation ofpain in rheumatic patients. J Rheumatol.1991;18(8): 1269-1270.

Kamwendo K, Askenbom M and Wahlgren C. Physicalactivity in the life of the patient with rheumatoidarthritis. Physiother Res Int 1999;4(4): 278-292.

Kavanaugh A, Menter A, Mendelsohn A, Shen YK, LeeS and Gottlieb AB. Effect of ustekinumab onphysical function and health-related quality of lifein patients with psoriatic arthritis: a randomized,placebo-controlled, phase II trial. Curr Med ResOpin 2010;26(10): 2385-2392.

Kavanaugh A, Fleischmann RM, Emery P, Kupper H,Redden L, Guerette B, Santra S and Smolen JS.Clinical, functional and radiographic consequencesof achieving stable low disease activity andremission with adalimumab plus methotrexate ormethotrexate alone in early rheumatoid arthritis:26-week results from the randomised, controlledOPTIMA study. Ann Rheum Dis 2012. Epub 2012/05/09.

Khanna D and Tsevat J. Health-related quality oflife—an introduction. Am J Manag Care 2007;13Suppl 9: S218-223.

Khraishi M, MacDonald D, Rampakakis E,Vaillancourt J and Sampalis JS. Prevalence ofpatient-reported comorbidities in early andestablished psoriatic arthritis cohorts. ClinRheumatol 2011;30(7): 877-885.

Kilpatrick K, Lavoie-Tremblay M, Ritchie JA,Lamothe L and Doran D. Boundary work and theintroduction of acute care nurse practitioners inhealthcare teams. J Adv Nurs 2012;68(7): 1504-1515.

Kiltz U and van der Heijde D. Health-related quality oflife in patients with rheumatoid arthritis and inpatients with ankylosing spondylitis. Clin ExpRheumatol 2009;27(4 Suppl 55): S108-111.

Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T,Ahlmen M, Boers M, Minnock P, Saag K, Shea B, etal. Outcomes from the Patient PerspectiveWorkshop at OMERACT 6. J Rheumatol2003;30(4): 868-872.

Kirwan JR, Ahlmen M, de Wit M, Heiberg T, Hehir M,Hewlett S, Katz PP, Minnock P, Quest EM andRichards P. Progress since OMERACT 6 onincluding patient perspective in rheumatoidarthritis outcome assessment. J Rheumatol2005a;32(11): 2246-2249.

Sofia Hagel 53

Kirwan JR, Hewlett SE, Heiberg T, Hughes RA, Carr M,Hehir M, Kvien TK, Minnock P, Newman SP, QuestEM, et al. Incorporating the patient perspectiveinto outcome assessment in rheumatoid arthritis—progress at OMERACT 7. J Rheumatol2005b;32(11): 2250-2256.

Kirwan JR, Minnock P, Adebajo A, Bresnihan B, ChoyE, de Wit M, Hazes M, Richards P, Saag K, Suarez-Almazor M, et al. Patient perspective: fatigue as arecommended patient centered outcome measure inrheumatoid arthritis. J Rheumatol 2007a;34(5):1174-1177.

Kirwan JR and Hewlett S. Patient perspective: reasonsand methods for measuring fatigue in rheumatoidarthritis. J Rheumatol 2007b;34(5): 1171-1173.

Kirwan JR, Fries JF, Hewlett SE, Osborne RH, NewmanS, Ciciriello S, van de Laar MA, Dures E, Minnock P,Heiberg T, et al. Patient perspective workshop:moving towards OMERACT guidelines for choosingor developing instruments to measure patient-reported outcomes. J Rheumatol 2011;38(8): 1711-1715.

Kjeken I, Ziegler C, Skrolsvik J, Bagge J, Smedslund G,Tovik A, Dagfinrud HS, Petersson IF and Hagen KB.How to develop patient-centered research: someperspectives based on surveys among people withrheumatic diseases in Scandinavia. Phys Ther2010;90(3): 450-460.

Klareskog L, Saxne T, Enman, Y. Reumatologi. 2005.Klokkerud M, Hagen K, Kjeken I, Bremander A,

Hørslev-Petersen K and Vliet Vlieland TP.Describing arthritis rehabilitation care.Development of a framework identifying domainsand elements of importance for arthritisrehabilitation care. Journal of RehabilitationMedicine 2012;44:406-413.

Knittle KP, De Gucht V, Hurkmans EJ, Vlieland TP,Peeters AJ, Ronday HK and Maes S. Effect of self-efficacy and physical activity goal achievement onarthritis pain and quality of life in patients withrheumatoid arthritis. Arthritis Care Res (Hoboken)2011;63(11): 1613-1619.

Korner M. Interprofessional teamwork in medicalrehabilitation: a comparison of multidisciplinaryand interdisciplinary team approach. Clin Rehabil2010;24(8): 745-755.

Kosinski M, Zhao SZ, Dedhiya S, Osterhaus JT andWare JE, Jr. Determining minimally importantchanges in generic and disease-specific health-related quality of life questionnaires in clinical trialsof rheumatoid arthritis. Arthritis Rheum2000;43(7): 1478-1487.

Kostanjsek N. Use of The International Classificationof Functioning, Disability and Health (ICF) as aconceptual framework and common language fordisability statistics and health information systems.BMC Public Health 2011a;11 Suppl 4: S3.

Kostanjsek N, Escorpizo R, Boonen A, Walsh NE,Ustun TB and Stucki G. Assessing the impact ofmusculoskeletal health conditions using theInternational Classification of Functioning,Disability and Health. Disabil Rehabil 2011b;33(13-14): 1281-1297.

Kostanjsek N, Rubinelli S, Escorpizo R, Cieza A,Kennedy C, Selb M, Stucki G and Ustun TB.Assessing the impact of health conditions using theICF. Disabil Rehabil 2011c;33(15-16): 1475-1482.

Kozera L, Andrews J and Morgan AW. Cardiovascularrisk and rheumatoid arthritis—the next step:differentiating true soluble biomarkers ofcardiovascular risk from surrogate measures ofinflammation. Rheumatology (Oxford)2011;50(11): 1944-1954.

Lagerstrom C and Nordgren B. On the reliability andusefulness of methods for grip strengthmeasurement. Scand J Rehabil Med 1998;30(2):113-119.

Leden I. [Rheumatology—a leading specialty. Amongthe first to introduce team work in health care].Läkartidningen 1995;92(13): 1383-1388.

Leden I and Nived O. Svensk Reumatologisk Förening50 år, Oskarshamn: AB Primo. 1996

Leden I, Gotherstrom A, Drenzel L and Svensson B.HLA-B27 sequences identified in a mediaevalskeleton with ankylosing spondylitis. Ann RheumDis 2009;68(5): 757-758.

Leden I, Gotherstrom A, Drenzel L and Svensson B.[“The Visby man’s” skeleton testifies about severepain]. Läkartidningen 2010;107(5): 275-276.

Lee S, Mendelsohn A and Sarnes E. The burden ofpsoriatic arthritis: a literature review from a globalhealth systems perspective. P T 2010;35(12): 680-689.

Lee J, Dunlop D, Ehrlich-Jones L, Semanik P, Song J,Manheim L and Chang RW. Public health impact ofrisk factors for physical inactivity in adults withrheumatoid arthritis. Arthritis Care Res (Hoboken)2012;64(4): 488-493.

Lemieux-Charles L and McGuire WL. What do weknow about health care team effectiveness? Areview of the literature. Med Care Res Rev2006;63(3): 263-300.

Li LC. What else can I do but take drugs? The future ofresearch in nonpharmacological treatment in earlyinflammatory arthritis. J Rheumatol Suppl2005;72: 21-24.

Linde L, Sorensen J, Ostergaard M, Horslev-PetersenK and Hetland ML. Does clinical remission lead tonormalization of EQ-5D in patients withrheumatoid arthritis and is selection of remissioncriteria important? J Rheumatol 2010;37(2): 285-290.

Lindqvist E, Saxne T, Geborek P and Eberhardt K. Tenyear outcome in a cohort of patients with earlyrheumatoid arthritis: health status, disease process,and damage. Ann Rheum Dis 2002;61(12): 1055-1059.

Lindqvist E, Jonsson K, Saxne T and Eberhardt K.Course of radiographic damage over 10 years in acohort with early rheumatoid arthritis. Ann RheumDis 2003;62(7): 611-616.

Lindroth Y, Bauman A, Barnes C, McCredie M andBrooks PM. A controlled evaluation of arthritiseducation. Br J Rheumatol 1989;28(1): 7-12.


Lindroth Y, Brattstrom M, Bellman I, Ekestaf G,Olofsson Y, Strombeck B, Stenshed B, Wikstrom I,Nilsson JA and Wollheim FA. A problem-basededucation program for patients with rheumatoidarthritis: evaluation after three and twelve months.Arthritis Care Res 1997;10(5): 325-332.

Lindstroem J, Jonsson I, Laine V and Vainio K.Capillary Structure and Function in RheumatoidArthritis. A Vital Microscopic Study of Conjunctivaland Surgically Exposed Joint Tissues. ActaRheumatol Scand 1963;9: 284-292.

Lipman RS, Covi L and Shapiro AK. The HopkinsSymptom Checklist (HSCL): factors derived fromthe HSCL-90 [proceedings]. Psychopharmacol Bull1977;13(2): 43-45.

Lorig K, Gonzalez VM, Laurent DD, Morgan L andLaris BA. Arthritis self-management programvariations: three studies. Arthritis Care Res1998a;11(6): 448-454.

Lorig K and Holman H. Arthritis Self-Efficacy Scalesmeasure self-efficacy. Arthritis Care Res1998b;11(3): 155-157.

Lubrano E, D’Angelo S, Parsons WJ, Corbi G, FerraraN, Rengo F and Olivieri I. Effectiveness ofrehabilitation in active ankylosing spondylitisassessed by the ASAS response criteria.Rheumatology (Oxford) 2007;46(11): 1672-1675.

Margaretten M, Barton J, Julian L, Katz P, Trupin L,Tonner C, Graf J, Imboden J and Yelin E.Socioeconomic determinants of disability anddepression in patients with rheumatoid arthritis.Arthritis Care Res (Hoboken) 2011a;63(2): 240-246.

Margaretten M, Julian L, Katz P and Yelin E.Depression in patients with rheumatoid arthritis:description, causes and mechanisms. Int J ClinRheumtol 2011b;6(6): 617-623.

Martindale J, Smith J, Sutton CJ, Grennan D, GoodacreL and Goodacre JA. Disease and psychological statusin ankylosing spondylitis. Rheumatology (Oxford)2006;45(10): 1288-1293.

McHugh K and Bowness P. The link between HLA-B27 and SpA—new ideas on an old problem.Rheumatology (Oxford) 2012. Epub 2012/04/20.

McKenna SP, Doward LC, Whalley D, Tennant A,Emery P and Veale DJ. Development of thePsAQoL: a quality of life instrument specific topsoriatic arthritis. Ann Rheum Dis 2004;63(2):162-169.

Metsios GS, Stavropoulos-Kalinoglou A, Veldhuijzenvan Zanten JJ, Treharne GJ, Panoulas VF, DouglasKM, Koutedakis Y and Kitas GD. “Rheumatoidarthritis, cardiovascular disease and physicalexercise: a systematic review.” Rheumatology(Oxford). 2008;47(3): 239-248.

Metsios GS, Stavropoulos-Kalinoglou A, Panoulas VF,Wilson M, Nevill AM, Koutedakis Y and Kitas GD.Association of physical inactivity with increasedcardiovascular risk in patients with rheumatoidarthritis. Eur J Cardiovasc Prev Rehabil 2009;16(2):188-194.

Minor MA, Hewett JE, Webel RR, Dreisinger TE andKay DR. Exercise tolerance and disease relatedmeasures in patients with rheumatoid arthritis andosteoarthritis. J Rheumatol 1988;15(6): 905-911.

Minor MA and Johnson JC. Reliability and validity ofa submaximal treadmill test to estimate aerobiccapacity in women with rheumatic disease. JRheumatol 1996;23(9): 1517-1523.

Mitchell R. Provincial News. Canad Med Ass J1964;90: 2.

Mokkink LB, Terwee CB, Knol DL, Stratford PW,Alonso J, Patrick DL, Bouter LM and de Vet HC.The COSMIN checklist for evaluating themethodological quality of studies on measurementproperties: a clarification of its content. BMC MedRes Methodol 2010;10: 22.

Myasoedova E, Crowson CS, Turesson C, Gabriel SEand Matteson EL. Incidence of extraarticularrheumatoid arthritis in Olmsted County, Minnesota,in 1995-2007 versus 1985-1994: a population-based study. J Rheumatol 2011;38(6): 983-989.

Neovius M, Simard JF and Askling J. Nationwideprevalence of rheumatoid arthritis and penetrationof disease-modifying drugs in Sweden. Ann RheumDis 2011;70(4): 624-629.

Nettelbladt P, Hansson L, Stefansson CG, Borgquist Land Nordstrom G. Test characteristics of theHopkins Symptom Check List-25 (HSCL-25) inSweden, using the Present State Examination (PSE-9) as a caseness criterion. Soc Psychiatry PsychiatrEpidemiol 1993;28(3): 130-133.

Neuberger GB, Smith KV, Black SO and Hassanein R.Promoting self-care in clients with arthritis.Arthritis Care Res 1993;6(3): 141-148.

Nicassio PM, Kay MA, Custodio MK, Irwin MR,Olmstead R and Weisman MH. An evaluation of abiopsychosocial framework for health-relatedquality of life and disability in rheumatoid arthritis.J Psychosom Res 2011;71(2): 79-85.

Nordenskiold UM and Grimby G. Grip force in patientswith rheumatoid arthritis and fibromyalgia and inhealthy subjects. A study with the Grippitinstrument. Scand J Rheumatol 1993;22(1): 14-19.

Nordmark B, Blomqvist P, Andersson B, HagerstromM, Nordh-Grate K, Ronnqvist R, Svensson H andKlareskog L. A two-year follow-up of work capacityin early rheumatoid arthritis: a study ofmultidisciplinary team care with emphasis onvocational support. Scand J Rheumatol 2006;35(1):7-14.

Norman G. The effectiveness and effects of effectsizes. Adv Health Sci Educ Theory Pract 2003;8(3):183-187.

Nyhall-Wahlin BM, Turesson C, Jacobsson LT,Nilsson JA, Forslind K, Albertsson K, Ronnelid J andPetersson IF. The presence of rheumatoid nodulesat early rheumatoid arthritis diagnosis is a sign ofextra-articular disease and predicts radiographicprogression of joint destruction over 5 years. ScandJ Rheumatol 2011;40(2): 81-87.

Sofia Hagel 55

Nyhäll-Wåhlin BM, Petersson IF, Jacobsson C,Geborek P, Nilsson J, Nilsson K, Brisard M,Jacobsson LT and Turesson C. Extra-articularmanifestations in a community based sample ofpatients with rheumatoid arthritis: incidence andrelation to treatment with TNF-inhibitors. Scand JRheumatol 2012. In press.

O’Leary A, Shoor S, Lorig K and Holman HR. Acognitive-behavioral treatment for rheumatoidarthritis. Health Psychol 1988;7(6): 527-544.

Olofsson T, Englund M, Saxne T, Joud A, JacobssonLT, Geborek P, Allaire S and Petersson IF. Decreasein sick leave among patients with rheumatoidarthritis in the first 12 months after start oftreatment with tumour necrosis factor antagonists:a population-based controlled cohort study. AnnRheum Dis 2010;69(12): 2131-2136.

Osborne RH, Wilson T, Lorig KR and McColl GJ. Doesself-management lead to sustainable health benefitsin people with arthritis? A 2-year transition study of452 Australians. J Rheumatol 2007;34(5): 1112-1117.

Ovayolu N, Ovayolu O and Karadag G. Health-relatedquality of life in ankylosing spondylitis,fibromyalgia syndrome, and rheumatoid arthritis: acomparison with a selected sample of healthyindividuals. Clin Rheumatol 2011;30(5): 655-664.

Pavy S, Brophy S and Calin A. Establishment of theminimum clinically important difference for thebath ankylosing spondylitis indices: a prospectivestudy. J Rheumatol 2005;32(1): 80-85.

Peters MJ, Symmons DP, McCarey D, Dijkmans BA,Nicola P, Kvien TK, McInnes IB, Haentzschel H,Gonzalez-Gay MA, Provan S, et al. EULARevidence-based recommendations forcardiovascular risk management in patients withrheumatoid arthritis and other forms ofinflammatory arthritis. Ann Rheum Dis2010;69(2): 325-331.

Petersson IF, Bremander A, Klareskog L andStenstrom CH. Who cares about team care?Conference report from CARE II. Spenshult,Sweden, 18-20 September 2003. Ann Rheum Dis2005;64(4): 644.

Petersson IF. Team care. Traditions and new trends. JRheumatol 2006;33(9): 1895-1896.

Pincus T, Sokka T and Kautiainen H. Patients seen forstandard rheumatoid arthritis care havesignificantly better articular, radiographic,laboratory, and functional status in 2000 than in1985. Arthritis Rheum 2005;52(4): 1009-1019.

Pincus T, Yazici Y and Bergman MJ. Patientquestionnaires in rheumatoid arthritis: advantagesand limitations as a quantitative, standardizedscientific medical history. Rheum Dis Clin NorthAm 2009;35(4): 735-743, vii.

Primdahl J, Wagner L, Holst R and Hørslev-PetersenK. The impact on self-efficacy of different types offollow-up care and disease status in patients withrheumatoid arthritis-A randomized trial. PatientEduc Couns 2012;88(1): 121-128.

Prvu Bettger JA and Stineman MG. Effectiveness ofmultidisciplinary rehabilitation services inpostacute care: state-of-the-science. A review. ArchPhys Med Rehabil 2007;88(11): 1526-1534.

Radner H, Ramiro S, Buchbinder R, Landewe RB, vander Heijde D and Aletaha D. Pain management forinflammatory arthritis (rheumatoid arthritis,psoriatic arthritis, ankylosing spondylitis and otherspondylarthritis) and gastrointestinal or livercomorbidity. Cochrane Database Syst Rev 2012;1:CD008951.

Rat AC, Pouchot J, Fautrel B, Boumier P, Goupille Pand Guillemin F. Factors associated with fatigue inearly arthritis: Results from the ESPOIR cohort.Arthritis Care Res (Hoboken) 2012. Epub 2012/02/23.

Rauch A, Cieza A and Stucki G. How to apply theInternational Classification of Functioning,Disability and Health (ICF) for rehabilitationmanagement in clinical practice. Eur J Phys RehabilMed 2008;44(3): 329-342.

Repping-Wuts H, Uitterhoeve R, van Riel P and vanAchterberg T. Fatigue as experienced by patientswith rheumatoid arthritis (RA): a qualitative study.Int J Nurs Stud 2008;45(7): 995-1002.

Reveille JD, Witter JP and Weisman MH. Theprevalence of axial spondyloarthritis in the UnitedStates: Estimates from the U.S. National Health andNutrition Examination Survey, 2009-10. ArthritisCare Res (Hoboken) 2012;64(5): 1407-1411.

Riemsma RP, Rasker JJ, Taal E, Griep EN, Wouters JMand Wiegman O. Fatigue in rheumatoid arthritis: therole of self-efficacy and problematic social support.Br J Rheumatol 1998;37(10): 1042-1046.

Rostom S, Dougados M and Gossec L. New tools fordiagnosing spondyloarthropathy. Joint Bone Spine2010;77(2): 108-114.

Ruffer M. On osseous lesions in ancient Egyptians. JPathol Bacteriol 2011;12(16): 439-464.

Rusk HA. Rehabilitation; the third phase of medicine.Can Med Assoc J 1949;61(6): 603-607.

Saad AA, Ashcroft DM, Watson KD, Symmons DP,Noyce PR and Hyrich KL. Improvements in qualityof life and functional status in patients withpsoriatic arthritis receiving anti-tumor necrosisfactor therapies. Arthritis Care Res (Hoboken)2010;62(3): 345-353.

Salaffi F, Carotti M, Gasparini S, Intorcia M and GrassiW. The health-related quality of life in rheumatoidarthritis, ankylosing spondylitis, and psoriaticarthritis: a comparison with a selected sample ofhealthy people. Health Qual Life Outcomes 2009;7:25.

Sandhu RS, Treharne GJ, Douglas KM, Cassim K,Saratzis A, Piper H, Erb N, Jenkins D, Tavakoli M,Deighton C and Kitas GD. The impact of anti-tumour necrosis factor therapy for rheumatoidarthritis on the use of other drugs and hospitalresources in a pragmatic setting. MusculoskeletalCare 2006;4(4): 204-222.

Schrieber L and Colley M. Patient education. BestPract Res Clin Rheumatol 2004;18(4): 465-476.


Scott DL, Smith C and Kingsley G. What are theconsequences of early rheumatoid arthritis for theindividual? Best Pract Res Clin Rheumatol2005;19(1): 117-136.

Shourt CA, Crowson CS, Gabriel SE and Matteson EL.Orthopedic Surgery Among Patients withRheumatoid Arthritis 1980-2007: A Population-based Study Focused on Surgery Rates, Sex, andMortality. J Rheumatol 2012;39(3): 481-485.

Simonsson M, Bergman S, Jacobsson LT, Petersson IFand Svensson B. The prevalence of rheumatoidarthritis in Sweden. Scand J Rheumatol 1999;28(6):340-343.

Smedstad LM, Moum T, Vaglum P and Kvien TK. Theimpact of early rheumatoid arthritis onpsychological distress. A comparison between 238patients with RA and 116 matched controls. Scand JRheumatol 1996;25(6): 377-382.

Smedstad LM, Kvien TK, Moum T and Vaglum P.Correlates of patients’ global assessment of arthritisimpact. A 2-year study of 216 patients with RA.Scand J Rheumatol 1997;26(4): 259-265.

Smith KW, Avis NE and Assmann SF. Distinguishingbetween quality of life and health status in quality oflife research: a meta-analysis. Qual Life Res1999;8(5): 447-459.

Smolen JS, Landewe R, Breedveld FC, Dougados M,Emery P, Gaujoux-Viala C, Gorter S, Knevel R, NamJ, Schoels M, Aletaha D, Buch M, Gossec L,Huizinga T, Bijlsma JW, Burmester G, Combe B,Cutolo M, Gabay C, Gomez-Reino J, Kouloumas M,Kvien TK, Martin-Mola E, McInnes I, Pavelka K,van Riel P, Scholte M, Scott DL, Sokka T, ValesiniG, van Vollenhoven R, Winthrop KL, Wong J, ZinkA and van der Heijde D. EULAR recommendationsfor the management of rheumatoid arthritis withsynthetic and biological disease-modifyingantirheumatic drugs. Ann Rheum Dis 2010;69(6):964-975.

Smolen JS, Kay J, Landewe RB, Matteson EL, GaylisN, Wollenhaupt J, Murphy FT, Zhou Y, Hsia EC andDoyle MK. Golimumab in patients with activerheumatoid arthritis who have previous experiencewith tumour necrosis factor inhibitors: results of along-term extension of the randomised, double-blind, placebo-controlled GO-AFTER study throughweek 160. Ann Rheum Dis 2012. Epub 2012/03/31.

Socialstyrelsen. Nationella riktlinjer förrörelseorganens sjukdomar – stöd för styrning ochledning. http://www.socialstyrelsen.se/publikationer2012/2012-5-1.2012.

Sokka T, Hakkinen A, Kautiainen H, Maillefert JF,Toloza S, Mork Hansen T, Calvo-Alen J, Oding R,Liveborn M, Huisman M, et al. Physical inactivityin patients with rheumatoid arthritis: data fromtwenty-one countries in a cross-sectional,international study. Arthritis Rheum 2008;59(1):42-50.

Sokka T, Toloza S, Cutolo M, Kautiainen H, MakinenH, Gogus F, Skakic V, Badsha H, Peets T,Baranauskaite A, et al. Women, men, andrheumatoid arthritis: analyses of disease activity,disease characteristics, and treatments in theQUEST-RA study. Arthritis Res Ther 2009;11(1):R7.

Spoorenberg A, van Tubergen A, Landewe R, DougadosM, van der Linden S, Mielants H, van de Tempel Hand van der Heijde D. Measuring disease activity inankylosing spondylitis: patient and physician havedifferent perspectives. Rheumatology (Oxford)2005;44(6): 789-795.

Stamm TA, Cieza A, Machold KP, Smolen JS andStucki G. Content comparison of occupation-basedinstruments in adult rheumatology andmusculoskeletal rehabilitation based on theInternational Classification of Functioning,Disability and Health. Arthritis Rheum 2004;51(6):917-924.

Staples MP, March L, Lassere M, Reid C andBuchbinder R. Health-related quality of life andcontinuation rate on first-line anti-tumour necrosisfactor therapy among rheumatoid arthritis patientsfrom the Australian Rheumatology AssociationDatabase. Rheumatology (Oxford) 2011;50(1):166-175.

Stenstrom CH. Home exercise in rheumatoid arthritisfunctional class II: goal setting versus painattention. J Rheumatol 1994a;21(4): 627-634.

Stenstrom CH. Therapeutic exercise in rheumatoidarthritis. Arthritis Care Res 1994b;7(4): 190-197.

Strand V and Khanna D. The impact of rheumatoidarthritis and treatment on patients’ lives. Clin ExpRheumatol 2010;28(3 Suppl 59): S32-40.

Strand V, Boers M, Idzerda L, Kirwan JR, Kvien TK,Tugwell PS and Dougados M. It’s good to feel betterbut it’s better to feel good and even better to feelgood as soon as possible for as long as possible.Response criteria and the importance of change atOMERACT 10. J Rheumatol 2011;38(8): 1720-1727.

Strand V, Sharp V, Koenig AS, Park G, Shi Y, Wang B,Zack DJ and Fiorentino D. Comparison of health-related quality of life in rheumatoid arthritis,psoriatic arthritis and psoriasis and effects ofetanercept treatment. Ann Rheum Dis2012a;71(7): 1143-1150.

Strand V, Rentz AM, Cifaldi MA, Chen N, Roy S andRevicki D. Health-related Quality of Life Outcomesof Adalimumab for Patients with Early RheumatoidArthritis: Results from a Randomized MulticenterStudy. J Rheumatol 2012b;39(1): 63-72.

Streiner DL and Norman GR. Health MeasurementScales. A practical guide to their development anduse. New York, Oxford University Press. 1995

Strombeck B, Jacobsson LT, Bremander A, Englund M,Heide A, Turkiewicz A and Petersson IF. Patientswith ankylosing spondylitis have increased sickleave—a registry-based case-control study over 7yrs. Rheumatology (Oxford) 2009;48(3): 289-292.

Sofia Hagel 57

Strombeck B, Englund M, Bremander A, Jacobsson LT,Kedza L, Kobelt G and Petersson IF. Cost of illnessfrom the public payers’ perspective in patients withankylosing spondylitis in rheumatological care. JRheumatol 2010;37(11): 2348-2355.

Stucki G and Ewert T. How to assess the impact ofarthritis on the individual patient: the WHO ICF.Ann Rheum Dis 2005;64(5): 664-668.

Stucki G, Cieza A and Melvin J. The InternationalClassification of Functioning, Disability and Health(ICF): a unifying model for the conceptualdescription of the rehabilitation strategy. J RehabilMed 2007a;39(4): 279-285.

Stucki G, Reinhardt JD, Grimby G and Melvin J.Developing “Human Functioning andRehabilitation Research” from the comprehensiveperspective. J Rehabil Med 2007b;39(9): 665-671.

Stucki G, Boonen A, Tugwell P, Cieza A and Boers M.The World Health Organisation InternationalClassification of Functioning, Disability and Health:a conceptual model and interface for theOMERACT process. J Rheumatol 2007c;34(3):600-606.

Sullivan M and Karlsson J. The Swedish SF-36 HealthSurvey III. Evaluation of criterion-based validity:results from normative population. J ClinEpidemiol 1998;51(11): 1105-1113.

Svensk Reumatologisk Förening. SvenskReumatologisk Förening - Riktlinjer. Retrieved 06-12, 2012, from http://www.svensk-reumatologi.se/riktlinjer. 2012

Swardh E, Biguet G and Opava CH. Views on exercisemaintenance: variations among patients withrheumatoid arthritis. Phys Ther 2008;88(9): 1049-1060.

Tanaka E, Mannalithara A, Inoue E, Hara M, TomatsuT, Kamatani N, Singh G and Yamanaka H. Efficientmanagement of rheumatoid arthritis significantlyreduces long-term functional disability. Ann RheumDis 2008;67(8): 1153-1158.

Tengstrand B, Ahlmen M and Hafstrom I. Theinfluence of sex on rheumatoid arthritis: aprospective study of onset and outcome after 2years. J Rheumatol 2004;31(2): 214-222.

Terwee CB, Bot SD, de Boer MR, van der Windt DA,Knol DL, Dekker J, Bouter LM and de Vet HC.Quality criteria were proposed for measurementproperties of health status questionnaires. J ClinEpidemiol 2007;60(1): 34-42.

Tijhuis GJ, Zwinderman AH, Hazes JM, Van Den HoutWB, Breedveld FC and Vliet Vlieland TP. Arandomized comparison of care provided by aclinical nurse specialist, an inpatient team, and a daypatient team in rheumatoid arthritis. ArthritisRheum 2002;47(5): 525-531.

Tijhuis GJ, Zwinderman AH, Hazes JM, Breedveld FCand Vlieland PM. Two-year follow-up of arandomized controlled trial of a clinical nursespecialist intervention, inpatient, and day patientteam care in rheumatoid arthritis. J Adv Nurs2003;41(1): 34-43.

Tugwell P and Boers M. Developing consensus onpreliminary core efficacy endpoints for rheumatoidarthritis clinical trials. OMERACT Committee. JRheumatol 1993;20(3): 555-556.

Tugwell PS, Petersson IF, Boers M, Gossec L, KirwanJR, Rader T, Sanderson TC, van de Laar MA,Ueffing E and Witter JP. Domains selection forpatient-reported outcomes: current activities andoptions for future methods. J Rheumatol2011;38(8): 1702-1710.

Turesson C, Jacobsson L and Bergstrom U. Extra-articular rheumatoid arthritis: prevalence andmortality. Rheumatology (Oxford) 1999;38(7):668-674.

Turesson C, Jarenros A and Jacobsson L. Increasedincidence of cardiovascular disease in patients withrheumatoid arthritis: results from a communitybased study. Ann Rheum Dis 2004;63(8): 952-955.

Turesson C and Matteson EL. Cardiovascular riskfactors, fitness and physical activity in rheumaticdiseases. Curr Opin Rheumatol 2007;19(2): 190-196.

Vainio K and Hurri L. Need of operations inrheumatoid arthritis. Acta Rheumatol Scand1961;7: 91-93.

van den Berg MH, de Boer I G, le Cessie S, Breedveld FC, Vliet Vlieland TPM. Are patients withrheumatoid arthritis less physically active than thegeneral population? J Clin Rheumatol 2007a;13(4):181-186.

van den Berg MH, de Boer IG, le Cessie S, Breedveld FCand Vliet Vlieland TP. Most people with rheumatoidarthritis undertake leeisure-time physical activity inthe Netherlands: an observational study. Aust JPhysiother 2007b;53(2): 113-118.

van den Berg R, Baraliakos X, Braun J and van derHeijde D. First update of the current evidence forthe management of ankylosing spondylitis withnon-pharmacological treatment and non-biologicdrugs: a systematic literature review for the ASAS/EULAR management recommendations inankylosing spondylitis. Rheumatology (Oxford)2012. Epub 2012/04/20.

Van den Ende CH, Vliet Vlieland TP, Munneke M andHazes JM. Dynamic exercise therapy in rheumatoidarthritis: a systematic review. Br J Rheumatol.1998;37(6): 677-687.

van den Hout WB, Tijhuis GJ, Hazes JM, Breedveld FCand Vliet Vlieland TP. Cost effectiveness and costutility analysis of multidisciplinary care in patientswith rheumatoid arthritis: a randomised comparisonof clinical nurse specialist care, inpatient team care,and day patient team care. Ann Rheum Dis2003;62(4): 308-315.

van den Hout WB, de Buck PD and Vliet Vlieland TP.Cost-utility analysis of a multidisciplinary jobretention vocational rehabilitation program inpatients with chronic arthritis at risk of job loss.Arthritis Rheum 2007;57(5): 778-786.


van der Heijde D, van der Linden S, Bellamy N, CalinA, Dougados M and Khan MA. Which domainsshould be included in a core set for endpoints inankylosing spondylitis? Introduction to theankylosing spondylitis module of OMERACT IV. JRheumatol 1999;26(4): 945-947.

van der Heijde DM, Revicki DA, Gooch KL, Wong RL,Kupper H, Harnam N, Thompson C and Sieper J.Physical function, disease activity, and health-related quality-of-life outcomes after 3 years ofadalimumab treatment in patients with ankylosingspondylitis. Arthritis Res Ther 2009;11(4): R124.

van der Horst-Bruinsma IE, Lems WF and DijkmansBA. A systematic comparison of rheumatoidarthritis and ankylosing spondylitis. Clin ExpRheumatol 2009;27(4 Suppl 55): S43-49.

van Eijk-Hustings Y, van Tubergen A, Bostrom C,Braychenko E, Buss B, Felix J, Firth J, Hammond A,Harston B, Hernandez C, et al. EULARrecommendations for the role of the nurse in themanagement of chronic inflammatory arthritis.Ann Rheum Dis 2012;71(1): 13-19.

van Vollenhoven RF, Ernestam S, Geborek P,Petersson IF, Coster L, Waltbrand E, Zickert A,Theander J, Thorner A, Hellstrom H, et al. Additionof infliximab compared with addition ofsulfasalazine and hydroxychloroquine tomethotrexate in patients with early rheumatoidarthritis (Swefot trial): 1-year results of arandomised trial. Lancet 2009;374(9688): 459-466.

van Vollenhoven RF and Severens JL. Observationalstudies: a valuable source for data on the true valueof RA therapies. Clin Rheumatol 2011;30 Suppl 1:S19-24.

van Vollenhoven RF, Geborek P, Forslind K,Albertsson K, Ernestam S, Petersson IF,Chatzidionysiou K and Bratt J. Conventionalcombination treatment versus biological treatmentin methotrexate-refractory early rheumatoidarthritis: 2 year follow-up of the randomised, non-blinded, parallel-group Swefot trial. Lancet2012;379(9827): 1712-1720.

Viitanen JV and Heikkila S. Functional changes inpatients with spondylarthropathy. A controlled trialof the effects of short-term rehabilitation and 3-year follow-up. Rheumatol Int 2001;20(5): 211-214.

Vliet Vlieland TP, Breedveld FC and Hazes JM. Thetwo-year follow-up of a randomized comparison ofin-patient multidisciplinary team care and routineout-patient care for active rheumatoid arthritis. Br JRheumatol 1997a;36(1): 82-85.

Vliet Vlieland TP and Hazes JM. Efficacy ofmultidisciplinary team care programs in rheumatoidarthritis. Semin Arthritis Rheum 1997b;27(2): 110-122.

Vliet Vlieland TP. Rehabilitation of people withrheumatoid arthritis. Best Pract Res Clin Rheumatol2003;17(5): 847-861.

Vliet Vlieland TP. Multidisciplinary team care andoutcomes in rheumatoid arthritis. Curr OpinRheumatol 2004;16(2): 153-156.

Vliet Vlieland TP and van den Ende CH.Nonpharmacological treatment of rheumatoidarthritis. Curr Opin Rheumatol 2011;23(3): 259-264.

Wade DT and de Jong BA. Recent advances inrehabilitation. Bmj 2000;320(7246): 1385-1388.

Wade DT. Describing rehabilitation interventions.Clin Rehabil 2005;19(8): 811-818.

Waldner A, Cronstedt H and Stenstrom CH. TheSwedish version of the Bath ankylosing spondylitisdisease activity index. Reliability and validity. ScandJ Rheumatol Suppl 1999;111: 10-16.

Ware JE, Jr. and Sherbourne CD. The MOS 36-itemshort-form health survey (SF-36). I. Conceptualframework and item selection. Med Care1992;30(6): 473-483.

Ware JE, Jr. The status of health assessment 1994.Annu Rev Public Health 1995;16: 327-354.

Weiss RJ, Stark A, Wick MC, Ehlin A, Palmblad K andWretenberg P. Orthopaedic surgery of the lowerlimbs in 49,802 rheumatoid arthritis patients:results from the Swedish National InpatientRegistry during 1987 to 2001. Ann Rheum Dis2006;65(3): 335-341.

Weiss RJ, Ehlin A, Montgomery SM, Wick MC, StarkA and Wretenberg P. Decrease of RA-relatedorthopaedic surgery of the upper limbs between1998 and 2004: data from 54,579 Swedish RAinpatients. Rheumatology (Oxford) 2008;47(4):491-494.

West E and Wallberg-Jonsson S. Health-related qualityof life in Swedish men and women with earlyrheumatoid arthritis. Gend Med 2009;6(4): 544-554.

Wiklund I, Romanus B and Hunt SM. Self-assesseddisability in patients with arthrosis of the hip joint.Reliability of the Swedish version of theNottingham Health Profile. Int Disabil Stud.1988;10(4): 159-163.

Wiklund I and Dimenas E. [The Swedish version of theNottingham Health Profile. A questionnaire for themeasurement of health-related quality of life].Läkartidningen 1990;87(18): 1575-1576.

Wolfe F, Hawley DJ and Wilson K. The prevalence andmeaning of fatigue in rheumatic disease. JRheumatol 1996;23(8): 1407-1417.

Work group recommendations: 2002 Exercise andPhysical Activity Conference SL, Missouri. SessionVI: population approaches to health promotion anddisability prevention through physical activity.Arthritis Rheum 2003;49(3): 477.

World Health Organisation. Preamble to theConstitution of the World Health Organization asadopted by the International Health Conference,New York, 19-22 June, 1946; signed on 22 July1946 by the representatives of 61. 1946.Retrieved 06-12, 2012.

World Health Organization. WHO InternationalClassification of Functioning, Disability and Health(ICF). 2012a. Retrieved 06-12, 2012, from http://www.who.int/classifications/icf/en/.

Sofia Hagel 59

World Health Organisation. WHO Definition ofrehabilitation. 2012b Retrieved 06-12, 2012, fromhttp://www.who.int/topics/rehabilitation/en/.

Documents

Team rehabilitation and health care utilization in chronic ...lup.lub.lu.se/search/ws/files/3721355/3021652.pdf · Team rehabilitation and health care utilization in chronic inflammatory