Evolving the comprehensive management of rheumatoid

arthritis: identification of unmet needs and development

of practical and educational tools
G.R. Burmester1, J.M. Álvaro-Gracia2, N. Betteridge3, J. Calvo Alén4, B. Combe5, P. Durez6,
B. Fautrel7, R.J.O. Ferreira8, C. Gabay9, A. Iagnocco10, C. Montecucco11, M. Østergaard12,
S. Ramiro13, A. Rubbert-Roth14, T. Stamm15, Z. Szekanecz16, P.C. Taylor17, M. van de Laar18
1
Department of Rheumatology and Clinical Immunology, Charité - University Medicine Berlin, Free University
and Humboldt University Berlin, Germany; 2Rheumatology Department, Hospital General Universitario Gregorio
Marañón, Universidad Complutense de Madrid, Spain; 3Neil Betteridge Associates, London, United Kingdom;
4
Jefe de Servicio de Reumatología del Hospital Universitario Araba, Vitoria-Gasteiz, Álava, Spain; 5Departement de
Rhumatologie, CHU Montpellier, Université Montpellier, France; 6Rheumatology, Cliniques Universitaires Saint-Luc,
Université Catholique de Louvain, Institut de Recherche Expérimentale et Clinique (IREC), Brussels, Belgium;
7
Rheumatology, Pitié-Salpêtrière University Hospital, Sorbonne Université/Assistance Publique, Hôpitaux de Paris,
Paris, France; 8Serviço de Reumatologia, Centro Hospitalar e Universitário de Coimbra, Portugal;
9
Department of Medicine and Department of Pathology and Immunology, Faculty of Medicine, University of Geneva,
Switzerland; 10Academic Rheumatology Centre, Università degli Studi di Torino, Turin, Italy; 11Department of
Rheumatology, IRCCS Policlinico S. Matteo Foundation, University of Pavia, Italy; 12Copenhagen Center for
Arthritis Research, Center for Rheumatology and Spine Diseases, Rigshospitalet, Glostrup, and Department of
Clinical Medicine, University of Copenhagen, Denmark; 13Leiden University Medical Center, Leiden, The
Netherlands and Zuyderland Medical Center, Heerlen, The Netherlands; 14Klinik für Rheumatologie, Kantonsspital
St. Gallen, Switzerland; 15Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent
Systems, Medical University of Vienna, Austria; 16Division of Rheumatology, Faculty of Medicine, University of
Debrecen, Hungary; 17Botnar Research Centre, Nuffield Department of Orthopaedics, Rheumatology and
Musculoskeletal Sciences, University of Oxford, United Kingdom; 18University of Twente, Faculty of Behavioural,
Management and Social Sciences, Enschede, The Netherlands.

Abstract
Objective
Despite availability of efficacious treatments, unmet needs still exist, preventing optimal and comprehensive management of
rheumatoid arthritis (RA). Evolving the management of RA (eRA) is a European-wide educational initiative aiming to support
improved patient care through practical and educational tools addressing specific unmet needs.

Methods
A multidisciplinary Steering Committee (17 members, 12 countries) identified unmet needs within the management of RA and
prioritised those with the greatest impact on patient outcomes. Practical educational tools addressing priority needs were then
developed for dissemination and implementation by the rheumatology community across Europe.

Results
Five areas of priority need were identified: increasing early recognition of RA and treatment initiation; treating RA to target;
optimal, holistic approach to selection of treatment strategy, including shared decision-making; improving identification and
management of comorbidities; and non-pharmacological patient management. A suite of 14 eRA tools included educational
slides, best-practice guidance, self‑assessment questionnaires, clinical checklists, a multidisciplinary team training exercise,
an interactive patient infographic, and case scenarios. By April 2020, rheumatology professionals in 17 countries had been
actively engaged in the eRA programme; in 11 countries, eRA tools were selected by national leaders in rheumatology and
translated for local dissemination. A web platform, with country-specific pages, was developed to support access to the
translated tools (https://www.evolvingthemanagementofra.com/).

Conclusion
The eRA programme supports comprehensive management of RA across Europe through development and dissemination of
practical educational tools. The eRA tools address priority needs and are available free of charge to the rheumatology community.

Key words
rheumatoid arthritis, medical education, delivery of healthcare, rheumatology, patient care team

Clinical and Experimental Rheumatology 2020; 38: Clinical

1056-1067.
and Experimental Rheumatology 2020
 Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

Gerd R. Burmester, MD Introduction industry-sponsored, European-wide

José María Álvaro-Gracia, MD Rheumatoid arthritis (RA) is a chronic health-education initiative with the
Neil Betteridge, BA Hons, MPhil inflammatory condition that requires vision to enhance scientific knowl-
Jaime Calvo Alén, MD
comprehensive management. The care edge and improve patient care in RA,
Bernard Combe, MD, PhD
Patrick Durez, MD, PhD of RA patients is primarily managed by and thereby improve outcomes. The
Bruno Fautrel, MD, PhD rheumatologists (1). In addition, sever- programme is independently led by a
Ricardo J.O. Ferreira, RN, MSc al healthcare organisations recommend multidisciplinary Steering Committee
Cem Gabay, MD that RA patients have access to a mul- (SC) comprising European experts in
Annamaria Iagnocco, MD tidisciplinary team (MDT) of health- rheumatology, and applies behavioural-
Carlomaurizio Montecucco, MD care professionals, which also includes change principles that have been vali-
Mikkel Østergaard, MD, PhD, DMSc
specialist nurses, physiotherapists and dated for use in healthcare settings (22-
Sofia Ramiro, PhD
Andrea Rubbert-Roth, MD occupational therapists, among others 24) to develop innovative, practical and
Tanja Stamm, PhD (2-4). Over the past 30 years, therapeu- educational tools designed to improve
Zoltán Szekanec, MD, PhD tic developments have led to the avail- patient outcomes. Tools are made avail-
Peter C. Taylor, PhD ability of efficacious disease‑modifying able free of charge and are developed
Mart van de Laar, MD, PhD anti‑rheumatic drugs (DMARDs) (2, for use by all health professionals rou-
Please address correspondence and 5). Nonetheless, only around 46–59% tinely involved with the management of
requests for reprints to: of patients with RA achieve Disease patients with RA (rheumatologists, spe-
Gerd R. Burmester, Activity Score (DAS) 28 remission cialist nurses, other MDT members), as
Department of Rheumatology
(i.e. DAS28 ≤2.6), and only 20–22% well as trainees and patients.
and Clinical Immunology,
Charité - University Medicine Berlin, achieve American College of Rheu- In this article, we present the eRA pro-
Free University and Humboldt matology (ACR)/European League gramme, with aims including: i. the
University Berlin, Against Rheumatism (EULAR) identification of unmet needs within
Charitéplatz 1, Boolean-based remission (6-11). Even the comprehensive management of RA
10117 Berlin, Germany. among those who become free from in- that have the greatest impact on patient
E-mail: gerd.burmester@charite.de flammatory joint symptoms, many ex- outcomes, from the perspectives of
Received on September 11, 2020; accepted perience other symptoms, such as pain, experts and patients; ii. the develop-
in revised form on October 28, 2020. fatigue, impaired functioning and emo- ment of practical and educational eRA
© Copyright Clinical and tional difficulties (12, 13). Unmet needs tools designed to address the identified
Experimental Rheumatology 2020. also remain within the wider clinical needs; and iii. the dissemination and
care realm, for instance with regards to implementation of the eRA programme
comorbidity management and patient- across Europe, which includes tailoring
centred care (14). Moreover, between the content to ensure local relevance
countries within and beyond Europe, for individual countries.
there is variability in rheumatological
care, resources and the organisational Methods
structure (15, 16). This variability can The eRA SC (chaired by Gerd R. Bur-
also impact the degree to which patient- mester) was formed in early 2017 and
centred approaches to care are utilised comprises 17 members from 12 Eu-
(17). ropean countries (Austria, Belgium,
EULAR has published several evi- Denmark, France, Germany, Italy, Hun-
dence‑based recommendations for RA gary, the Netherlands, Portugal, Spain,
management, including optimal use of Switzerland and the UK). In analogy to
DMARDs (1), management of early the 2014 update of the EULAR stand-
inflammatory arthritis (18), cardiovas- ardised operating procedures (25), the
cular disease risk management (19), eRA SC consists of the Chair, a EU-
the importance of promoting physical LAR-certified methodologist (Sofia
activity (20), and pain management Ramiro), rheumatology clinical experts,
(21). The wide‑ranging EULAR recom- and health professionals as well as a pa-
mendations inspired us to consider how tient representative. The eRA SC was
unmet needs within the comprehensive selected based on their experience and
management of patients with RA might different perspectives on the manage-
be addressed in clinical practice across ment of RA, from various countries and
Europe. with different roles in the rheumatology
Thus, we initiated the ‘Evolving the MDT (purposive selection), and the SC
management of RA’ (eRA) programme. was established prior to commencement
Competing interests: see page 1064. The eRA programme is an ongoing, of the programme. The eRA programme

Clinical and Experimental Rheumatology 2020 1057

Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

Fig. 1. eRA programme methodology and progress (January 2017 to October 2019).
eRA: Evolving the management of RA; EULAR: European League Against Rheumatism; RA: rheumatoid arthritis; SC: Steering Committee.

is supported by Sanofi Genzyme. Pro- of evidence were determined for each standards and international recommen-
gramme direction and content creation reference (Oxford Centre for Evidence- dations (1, 2, 18-21).
are driven by an independent SC, and Based Medicine. https://www.cebm.
Sanofi Genzyme did not have any influ- ox.ac.uk/resources/levels-of-evidence/ Aim iii: Dissemination plans of the
ence on the content of the programme. ocebm-levels-of-evidence). The eRA eRA programme
Fig. 1 summarises the eRA programme SC then prioritised the unmet needs to Cascade of the eRA programme into
methodology and progress up to Octo- identify those with the greatest impact clinical practice across Europe is ongo-
ber 2019. on outcomes, based on international rec- ing and includes regional meetings, na-
ommendations (1, 2, 18-21), the wider tional meetings, congress activities and
Aim i: Identification of priority literature and their own experiences. a dedicated eRA web platform.
unmet needs Behavioural-change principles were National leaders in rheumatology were
As the first step, unmet needs with- then applied to determine how these pri- engaged in two multi-country work-
in the management of RA were ority unmet needs might be addressed, shops, led by the eRA SC. The work-
identified through a combination with the aim of going beyond provision shops involved presentation of the eRA
of 1 hour 1:1 telephone interviews with of information, which alone is not suf- tools to national leaders by the eRA SC,
the eRA SC, with insight notes made ficient to change behaviour (23, 26). with opportunities for national leaders
during and after the interviews, supple- to discuss the value and utility of each
mented with targeted literature search- Aim ii: Development of practical tool within individual country groups.
es based on EULAR recommendations. and educational eRA tools Dissemination and implementation
EULAR recommendations and their Educational requirements and clinical were further supported through local
accompanying systematic literature care gaps were identified for each area meetings with rheumatologists, hosted
reviews (2010 – present) were used to of unmet need, and educational tools by the eRA SC and national leaders, us-
identify topics of interest and determine were designed and developed to address ing a ‘meeting-in-a-box’ approach with
the evidence supporting them. Where these gaps by (i) enhancing knowledge standardised meeting materials for con-
recommendations covered wider arthri- in the areas of unmet need and (ii) of- sistency. The ‘meeting-in-a-box’ con-
tis populations, only evidence in RA fering practical solutions that support tent included guidance for the organiser,
was considered. For each topic, targeted daily clinical practice and improve pa- templates for the invitation and agenda,
PubMed literature searches were then tient care in RA. The tools drew upon and guidance on the eRA programme
performed using relevant terms in the the expertise and best practice from the and tools. To ensure that the eRA tools
title and abstract, alongside ‘rheumatoid perspectives of the SC, and the guid- met individual country needs, the na-
arthritis’ in the title. Oxford 2011 levels ance was developed in line with current tional leaders in rheumatology worked

1058 Clinical and Experimental Rheumatology 2020

 Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

Table I. eRA pillars: priority unmet needs in RA management and educational themes.

Priority unmet needs in RA management Educational themes

1: Increasing early recognition of RA and treatment initiation

Delays in identification of RA in primary care, referral to rheumatology centres and Early referral and initiation of DMARDs improves RA
initiation of DMARDs remission rates, slows disease progression and minimises
Variations across countries in early recognition and treatment of RA joint damage
Lack of understanding that early treatment initiation impacts on patient outcomes

2: Treating RA to target
Rheumatologist adherence to treat-to-target protocol declines over time Consistent application of a treat-to-target approach using
a validated composite measure of disease activity ensures
an optimal RA outcome for each patient

3: Optimal, holistic approach to selection of treatment strategy, including shared decision-making

Disconnect between patient and physician in prioritisation of treatment goals The treatment strategy for RA should aim at the best care
Lack of shared decision-making and patient engagement for the individual and be based on a shared decision
Poor communication among MDT between the patient and MDT

4: Improving identification and management of comorbidity

Suboptimal awareness of associated comorbidities in RA Management of comorbid conditions in patients with RA
Lack of understanding of impact of comorbidities on patient outcomes helps to mitigate effects of these conditions on RA
Rheumatologist and GP do not communicate about a patient’s comorbidities outcomes

5: Non-pharmacological patient management

Lack of guidance to support evidence-based use of non-pharmacological interventions Evidence-based non-pharmacological management
Lack of clarity regarding selection of non-pharmacological interventions on an individual supports an optimal approach to patient care and should
patient basis be tailored for each individual patient by engaging the
entire MDT

DMARD: disease-modifying anti-rheumatic drug; eRA: Evolving the management of RA; EULAR: European League Against Rheumatism; GP: general
practitioner; MDT: multidisciplinary team; RA: rheumatoid arthritis

alongside the eRA SC to select the rel- dress the educational needs and clinical are considerable variations across coun-
evant eRA tools; the selected tools were care gaps within these pillars, educa- tries, but delays can lie in the initial
then translated, with an option to update tional themes were defined (Table I), recognition of early inflammatory ar-
content to reflect local guidelines and and a suite of 14 practical and educa- thritis, referral from the general practi-
nuances in clinical practice if required. tional eRA tools were designed and de- tioner (GP), wait time from referral to
At the EULAR European Congress of veloped (Table II). the first rheumatologist visit, and time
Rheumatology in 2018 and 2019, the to initiation of appropriate treatment
programme was evaluated within the eRA pillar 1: Increasing early (28-36). The evidence indicates
international rheumatology community recognition of RA and treatment that delays in treatment initiation
using an anonymised exploratory sur- initiation can impact on outcomes (18, 37).
vey to gain feedback on the perceived – Unmet needs A delay in referral to secondary-care
value of the practical and educational EULAR recommendations for the man- specialists is one of the most important
tools provided, and was presented as a agement of early inflammatory arthri- causes of late diagnosis and late start of
scientific poster (27), with short semi- tis highlight that patients presenting effective treatment (18). Therefore, dis-
nars led by eRA SC members. with any joint swelling associated with cussing issues around early recognition
An eRA web platform (https://www. pain or stiffness should be referred to, of RA within the community of rheu-
evolvingthemanagementofra.com), and seen by, a rheumatologist within matologists and other healthcare pro-
with country-specific pages, is further 6 weeks of symptom onset, and that fessionals caring for patients with early
supporting dissemination of the eRA patients at risk of persistent arthritis arthritis may be beneficial for patient
programme. The pages provide infor- should be started on DMARDs ide- outcomes (18).
mation about the eRA programme and ally within 3 months (18). However, a
enable download of all eRA tools that study of 482 patients with newly pre- – Supporting eRA tools
were selected as locally relevant by the senting RA from eight European coun- • Educational slides for this pillar
national rheumatology experts. tries suggested that time from symptom highlight the status of patient refer-
onset to rheumatologist assessment rals and treatment initiation across
Results was a median 24 weeks (range 16−38 Europe, the positive effects that early
Five eRA pillars of focus were defined, weeks). Only a proportion of patients intervention can have on long-term
following identification of priority un- (median 20.5%, range 8–42%) were RA outcomes (38-41), and the impor-
met needs within the comprehensive seen within the therapeutic window of tance of initiating DMARDs within
management of RA (Table I). To ad- 12 weeks of symptom onset (28). There a therapeutic window of opportunity

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Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

Table II. eRA tools: objective and use.

eRA tool (code) Objective Use

1: Increasing early recognition of RA and treatment initiation

Educational slides Slides that raise awareness of the importance For presentation by rheumatologists or MDT in local meetings
of early recognition and treatment of RA PowerPoint presentation
Best-practice guidance Best-practice examples of approaches to early A reference piece for use during review of clinic performance
recognition and treatment of RA from across Europe Print format; A4 1pp
Self-reflection questionnaire A self-audit of clinic performance vs. EULAR Completion by rheumatologists at regular intervals to
recommendations for early inflammatory arthritis (18) evaluate clinic performance
Print format; A5 4pp

2: Treating RA to target
Educational slides Slides that raise awareness of declining For presentation by rheumatologists in local meetings
rheumatologist adherence to treat-to-target PowerPoint presentation
recommendations, and the barriers
Self-reflection questionnaire A self-audit for clinic performance vs. EULAR Completion by rheumatologists at regular intervals to evaluate
recommendations for treating RA to target (2) clinic performance
Print format; A5 4pp

3: Optimal, holistic approach to selection of treatment strategy, including shared decision-making

Educational slides Slides on the importance of shared decision-making For use by rheumatologists and MDT to encourage shared
to patient outcomes, and how this is best achieved decision-making
PowerPoint presentation
Treatment considerations checklist Checklist to support regular tracking of a patient’s Nurse or support staff to document clinical and life style
clinical and lifestyle factors that may impact on factors in checklist (to be filed alongside patient chart); for
treatment and management decisions review by rheumatologists when making decisions
Print format; A4 4pp
MDT training exercise MDT crafts an appropriate management strategy Training exercise for the MDT, led by an experienced rheuma-
for a fictional patient profile, based on a patient tologist with support from included facilitation guide
demographic, baseline disease feature, additional Print format; A7 cards in coloured bags with A4 facilitation
disease factor and patient lifestyle consideration guide

4: Improving identification and management of comorbidity

Educational slides Slides that raise awareness of the association of RA For use by rheumatologists and MDT, and with GPs, to raise
with comorbidities, and the effects on out comes awareness of RA-associated comorbidities
PowerPoint presentation
Comorbidity checklist Checklist to support monitoring of common For use in patient consultations to ensure all applicable comor-
comorbidities in patients with RA bid conditions have been reviewed by designated personnel
Print format; A4 2pp
‘Dear GP’ comorbidity letter To request GP vigilance with regards to A template letter for use by rheumatologists when communi-
comorbidities and encourage a collaborative cating with a patient’s GP
approach to care Digital template; Word document

5: Non-pharmacological patient management

Educational slides Slides providing evidence base for the use of For use by rheumatologists and MDT, and with GPs, for evi-
different non-pharmacological interventions in RA dence-based guidance
PowerPoint presentation
Interactive patient infographic An interactive infographic for patients with RA For use in patient consultations to support education and
which features elements of daily life that might be shared decision-making; also, for independent patient use in
important to them, with hyperlinks to online waiting rooms or away from clinic
educational resources Digital interactive PDF format

All eRA pillars

Case scenarios A series of case scenarios that follow a single For use with trainee health professionals and GPs to support
hypothetical patient with RA across different stages education on the comprehensive management of RA
of disease, outlining where the eRA tools can be used PowerPoint presentation

DMARD: disease-modifying anti-rheumatic drug; eRA: Evolving the management of RA; EULAR: European League Against Rheumatism; GP: general
practitioner; MDT: multidisciplinary team; RA: rheumatoid arthritis.

approximately 3 months from symp- highlight early recognition and treat- • Best-practice guidance provides ex-
tom onset (18, 42). The slides were ment initiation of RA as an unmet amples of optimal approaches to
designed to support rheumatologists need in local meetings with other early recognition and treatment of
and other members of the MDT, es- healthcare professionals caring for RA from across Europe, including
pecially primary-care physicians, to patients with early arthritis. an early arthritis recognition clinic

1060 Clinical and Experimental Rheumatology 2020

 Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

in the Netherlands (34), a fast-track RA to target (2); completion of the decisions, to ensure a patient-centric
clinic and online consultations in self‑reflection questionnaire at regu- approach to care.
Spain (Jaime Calvo Alén, eRA SC lar intervals enables consideration • An MDT training exercise, facilitat-
member, personal communication), of whether practical changes can be ed by an experienced staff member
and nurse-led clinics and a flare hel- made to improve outcomes. (e.g. consultant rheumatologist), en-
pline in the UK (43; Peter Taylor, gages the team and encourages con-
eRA SC member, personal commu- eRA pillar 3: Optimal, holistic approach sideration of the patient perspective
nication). to selection of treatment strategy, when crafting an appropriate man-
• A self‑assessment questionnaire on including shared decision-making agement strategy for a fictional pa-
the early recognition of RA allows – Unmet needs tient profile. Participants create the
rheumatologists to track their clinic EULAR recommendations emphasise fictional patient profile by drawing
performance against the EULAR that treatment of RA should aim at best one card from each of four sets (pa-
recommendations (18); completion care and must be based on a shared de- tient demographics, baseline disease
of the self‑reflection questionnaire cision between the patient and rheuma- features, additional disease factors,
at regular intervals enables con- tologist (1, 18). Evidence shows that patient lifestyle considerations), and
sideration of whether areas of care there is a disconnect between patients then devise an individualised treat-
might need adjustment. and physicians in their assessment ment and management strategy for
of disease status and prioritisation of the patient.
eRA pillar 2: Treating RA to target treatment goals, with patients gener-
– Unmet needs ally valuing control of pain and fatigue, eRA pillar 4: Improving identification
International recommendations ad- improved functioning and psychosocial and management of comorbidities
vocate a treat-to-target approach for well-being over joint counts and inflam- – Unmet needs
RA, with clinical remission as the pri- matory markers (50, 51). Lack of align- RA is associated with a multitude of
mary target, use of validated compos- ment between the patient and physician comorbidities, which may be related
ite measures of disease activity, and may negatively affect shared decision- to age, systemic inflammatory effects
frequent monitoring of disease activity making and optimal RA management of RA beyond the joint, smoking, lack
with adjustment of therapy as required (51). Shared decision-making (SDM) is of physical activity, and the effects of
to meet and maintain the treatment tar- a process by which physicians collabo- medications used in its treatment (57-
get (2). In daily clinical practice, the rate with patients to provide high-quali- 61). Common comorbidities in RA
correct application of a treat-to-target ty care based on best available evidence include cardiovascular disease, pul-
strategy in patients with RA can lead to and eliciting patients’ values and pref- monary disorders, osteoporosis, infec-
higher rates of remission (44). Howev- erences (52). Agreement of this princi- tion, and depression (58, 60, 62, 63).
er, evidence shows that rheumatologist ple was high among the EULAR task Evidence demonstrates that comorbid
adherence to a treat-to-target protocol force (1), and other professional bodies cardiovascular disease, certain pulmo-
can be suboptimal and declines over including the ACR and Outcome Meas- nary disorders, and infection are asso-
time in clinical practice (45-47). Rec- ures in Rheumatology (OMERACT) ciated with increased risk of mortality
ommendations on use of a validated also recommend SDM (53, 54). Clini- in patients with RA (64-66). Similarly,
composite measure of disease activity cal experience of the eRA SC suggests RA may have important implications
and frequency of monitoring are not that SDM and patient engagement are on outcomes and prognoses in patients
always adhered to (48, 49). Rheuma- not always applied, and that communi- with comorbid malignancy (67). Pres-
tologists may often accept low disease cation among the MDT can be poor. ence of comorbidities can also impact
activity as a ‘good enough’ treatment on RA outcomes and patient function-
goal, particularly in patients with a – Supporting eRA tools ing (68, 69). Clinical experience of the
long disease duration (49). • Educational slides for this pillar eRA SC suggests that rheumatologists
explain the importance of SDM be- and GPs do not always communicate
– Supporting eRA tools tween the patient and rheumatologist about a patient’s comorbidities.
• Educational slides for this pillar (1) and the MDT, how this is best
raise awareness of the decline in achieved (1, 55), and potential ben- – Supporting eRA tools
rheumatologist adherence to treat- efits in terms of patient persistence • Educational slides for this pillar
to-target recommendations over with treatment, satisfaction and en- raise awareness of the association
time and identify barriers to apply- gagement (56). of RA with comorbidities, by over-
ing a treat-to-target approach. • A treatment considerations checklist viewing the common RA-associated
• A self‑assessment questionnaire on supports tracking of clinical factors comorbidities and their effects on
treating RA to target allows rheu- (e.g. comorbidities) and lifestyle outcomes. The slides also summa-
matologists to quantify progress in factors (e.g. alcohol consumption, rise the EULAR recommendations
their implementation of the interna- frequent travel, occupation) that can for cardiovascular risk management
tional recommendations on treating be reviewed when making treatment and for treatment/prevention of

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Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

glucocorticoid-induced osteoporo- Table III. eRA tools selected for dissemination according to local needs.
sis (19, 70), and highlight lifestyle
eRA tool Country
modifications that can help in man-
aging risks of comorbidities (71). BE CH DE ES NL UK
• A comorbidity checklist supports 1: Increasing early recognition of RA and treatment initiation
the identification and monitoring of Educational slides x x x x
common comorbidities in patients Best-practice guidance x x x
with RA. Self-reflection questionnaire x x x
• A ‘Dear GP’ comorbidity letter tem- 2: Treating RA to target
plate facilitates rheumatologists’ Educational slides x x x
communication with a patient’s GP Self-reflection questionnaire x x x
to request vigilance with regards to 3: Optimal, holistic approach to selection of treatment strategy, including shared decision-making
comorbidities and encourages a col- Educational slides x x x
Treatment considerations checklist x x x
laborative approach to care.
MDT training exercise x x x x x x

eRA pillar 5: Non-pharmacological 4: Improving identification and management of comorbidity

Educational slides x x x x
patient management Comorbidity checklist x x x x
– Unmet needs ‘Dear GP’ comorbidity letter x x x
There is growing recognition that non-
5: Non-pharmacological patient management
pharmacological interventions are help- Educational slides x
ful to complement pharmacological Interactive patient infographic x x
management of RA, as supported by
All eRA pillars
EULAR recommendations on the im- Case scenarios x x x
portance of physical activity (20), pain
management (21) and management of BE: Belgium; CH: Switzerland; DE: Germany; eRA: Evolving the management of RA; ES: Spain;
early inflammatory arthritis (18). Non- GP: general practitioner; MDT: multidisciplinary team; NL: the Netherlands; UK: United Kingdom.
pharmacological interventions are rec-
ommended as part of the management decision and tailored according to the hypothetical patient throughout their
plan in both established and early RA individual patient’s needs and char- RA journey. Cases were designed for
(1, 18), but few studies have specifi- acteristics (1, 18, 20, 21). Strong use with trainee healthcare profession-
cally investigated non-pharmacological evidence, in terms of benefits on out- als and GPs to support education on the
therapy in early arthritis (72). While the comes (such as pain, patient function- comprehensive management of RA.
few studies available support its use, ing or self-efficacy), supports use of Four scenarios follow the same patient
recommendations in early RA to date the following non‑pharmacological from pre-diagnosis RA, through early
largely extrapolate from the results of interventions in appropriate patients: RA and established RA, to long-term
several RCTs in established RA (18, physical activity (73–75); certain RA. Educational needs and clinical
72). A difficulty faced by the MDT is occupational therapy interven- care gaps are highlighted, with align-
that a wide range of non-pharmacolog- tions (73,76); patient education and ment to the eRA tools that could sup-
ical interventions is available, but their self‑management interventions (73, port an optimal approach to the com-
use is not always supported by evi- 77); and certain psychosocial inter- prehensive management of RA.
dence. Guidance on the evidence-based ventions (73, 78, 79). Other interven-
selection of non-pharmacological inter- tions (e.g. hand exercises, nutrition Dissemination of the eRA programme
ventions is lacking. Clinical experience and diet) require additional evidence To date, rheumatology professionals
of the eRA SC suggests a lack of clarity before findings can translate into rou- from 17 countries (Argentina, Austria,
regarding selection of non-pharmaco- tine practice (80, 81). Belgium, Croatia, Denmark, France,
logical interventions on an individual • An interactive patient infographic, Germany, Hungary, Ireland, Israel,
patient basis. in digital PDF format, enables pa- Italy, the Netherlands, Portugal, Slov-
tients to access best-practice educa- enia, Spain, Switzerland and the UK)
– Supporting eRA tools tional material for living with RA, have been actively engaged in the eRA
• Educational slides for this pillar pro- via hyperlinks to online educational programme by participating in regional
vide the evidence base to inform the resources. and local meetings to discuss the pro-
use of different non‑pharmacological gramme. A total of 54 national leaders
interventions in clinical practice. EU- eRA pillars 1–5: Case scenarios in rheumatology from 14 European
LAR recommendations highlight that based on a hypothetical patient countries attended two multi-country
use of non‑pharmacological interven- throughout their RA journey workshops.
tions (as with pharmacological inter- To support all eRA pillars, case scenar- As of April 2020, 11 countries (Argen-
ventions) should be based on a shared ios were developed that follow a single tina, Belgium, Croatia, Denmark, Ger-

1062 Clinical and Experimental Rheumatology 2020

 Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

Fig. 2. Unmet needs in the management of RA: survey responses at EULAR 2019 (n=44).
DMARD: disease-modifying anti-rheumatic drug; EULAR: European League Against Rheumatism; MDT: multidisciplinary team; RA: rheumatoid arthritis.

many, Italy, the Netherlands, Slovenia, Table IV. Local eRA webpages and available tools.
Spain, Switzerland and the UK) had
Country and web address Number of Additional regional
initiated activities to disseminate the eRA tools materials available
eRA programme. This included meet- available (developed by eRA
ings to discuss local approaches to dis- National Faculty)
seminating the eRA programme, for
Germany
instance, which of the eRA pillars best https://www.evolvingthemanagementofra.de/login 12 1
fit local needs and interests. To date,
Spain
these meetings have involved a total https://www.evolvingthemanagementofra.com/es/login 12 1
of 94 rheumatologists and rheumatol- UK
ogy nurses. Seven countries completed https://www.evolvingthemanagementofra.com/uk/login 5 9
selection of relevant eRA tools (Table
III). Four countries (Argentina, Croatia, eRA: Evolving the management of RA; UK: United Kingdom.
Spain and Switzerland) held activities
to promote the programme locally, in- congress delegates in 2019; all of the veloped in response to identified priority
cluding regional launch meetings and 44 respondents to this survey believed unmet needs within the comprehensive
symposia at national congresses, reach- that there are still unmet needs in the management of RA, grouped into five
ing approximately 370 healthcare pro- management of patients with RA (Fig. pillars. These tools include educational
fessionals. eRA dissemination activity 2 reports survey responses for specific slides, best-practice recommendations,
planning is under way in the other par- unmet needs), and 98% of respondents self‑assessment questionnaires, clini-
ticipating countries. believed that providing practical tools cal checklists, an MDT training exer-
At EULAR 2018 and 2019, more than could help to address some of the un- cise, an interactive patient infographic,
160 USB sticks containing eRA tools met needs. and patient case scenarios.
were distributed to interested del- By April 2020, local pages of the eRA The priority unmet needs identified
egates. At EULAR 2019, three ‘Meet- web platform had been launched in in the eRA programme are reflective
the-expert’ sessions were delivered, three countries: Germany, Spain and of the management topics covered in
featuring a short presentation from a the UK (Table IV). Additional local EULAR recommendations for RA (1,
member of the eRA SC and a demon- pages are under development in partici- 18-21) and the unmet needs (beyond
stration of the eRA MDT exercise, with pating countries. development of novel therapeutics) re-
up to 20 delegates attending each ses- ported in the wider literature (2, 12, 14,
sion. An exploratory survey on the eRA Discussion 82, 83).
programme and tools was conducted The eRA programme’s suite of 14 prac- The eRA programme is innovative in
among a small number of interested tical and educational tools has been de- its vision to evolve the comprehensive

Clinical and Experimental Rheumatology 2020 1063

Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

management of RA through the devel- standards of care in their clinic. There speaker fees from BMS, GSK, Eli Lilly
opment of practical and educational are plans to extend the programme’s and Roche, and has participated in advi-
tools. Few practical and educational reach to additional countries. sory boards of AbbVie, Celgene, Jans-
tools exist for use in clinical practice As the programme continues to sen and Sanofi Genzyme.
by rheumatologists and MDT mem- evolve, the impact on clinical prac- B. Combe has received research grants
bers, with existing initiatives focusing tice will be assessed by means from Novartis, Pfizer and Roche-Chu-
on provision of education (e.g. train- of the web platform surveys, and the gai, and honoraria from AbbVie, Gile-
ing courses) alone (84, 85). In the eRA findings will be used to adapt the content ad, Janssen, Nordic, Novartis, Eli Lilly,
programme, tools are available free of to ongoing need. Although the results of Pfizer, Roche-Chugai, Sanofi and UCB.
charge across the five eRA pillars of fo- the user survey conducted at EULAR P. Durez has received speaker fees from
cus; within each pillar, the tools are in- 2019 are presented in Fig. 2, possible BMS, Eli Lilly, Sanofi and Celltrion.
tended to be used alongside each other, selection bias among the survey partici- B. Fautrel has received research grants
to address the educational needs and pants must be acknowledged as a poten- from AbbVie, Eli Lilly, MSD and Pfiz-
clinical care gaps. tial limitation of the feedback to date. er; and consultancy fees from AbbVie,
Dissemination of eRA is ongoing, Through its ongoing dissemination Amgen, Biogen, BMS, Celgene, Jans-
and the programme is reaching clini- activities, and future progression, the sen, Eli Lilly, Medac, Mylan, MSD,
cal practice in countries across Eu- eRA programme aims to provide im- NORDIC Pharma, Novartis, Pfizer,
rope. Various combinations of tools pactful practical and educational tools Roche, Sanofi-Aventis, SOBI and UCB.
were selected by national leaders dur- to as many health professionals and R.J.O. Ferreira has received an unre-
ing cascade activities, with tools being healthcare providers as possible, there- stricted research grant from AbbVie,
selected according to the educational by evolving the comprehensive man- speaker fees from MSD, Sanofi Gen-
and contextual needs of each national agement of patients with RA, with the zyme and UCB, and consultation fees
healthcare system. Another feature of intent to ultimately improve outcomes. from Amgen, Roche and Sanofi Gen-
the programme is the freely accessible, zyme.
simple-to-use format of the eRA tools; Acknowledgements C. Gabay has received research grants
MDT members involved with the man- Jennifer Badger, Cath Carsberg, and from AB2 Bio Ltd, Roche and Sanofi,
agement of patients with RA have time Katharina Schleicher from Lucid Group and consultancy fees from AB2 Bio
pressures in clinical practice, and it is provided medical writing assistance Ltd, AbbVie, BMS, Celgene, Janssen,
hoped that this accessible format will in the preparation of this manuscript; Eli Lilly, MSD, Novartis, Pfizer, Roche
support provision of high standards of Sanofi Genzyme provided funding for and UCB.
patient care. An eRA web platform with this assistance. The eRA programme A. Iagnocco has received research
specific country pages, three of which is funded by Sanofi Genzyme and SC grants from AbbVie, MSD and Alfasig-
are finalised at the time of writing, is members are paid honoraria for their ma; and consultation fees from AbbVie,
enabling widespread download of the contribution towards the programme, Abiogen, Alfasigma, Biogen, BMS,
localised eRA tools (Table IV). excluding this publication. Programme Celgene, Eli Lilly, Janssen, MSD,
The eRA programme is an enduring direction and content are entirely driv- Novartis, Sanofi and Sanofi Genzyme.
initiative that will adapt over time to en by the SC, with execution supported C. Montecucco has received consul-
improve the comprehensive manage- by an independent medical education tancy fees from Sanofi Genzyme.
ment of RA as the needs evolve. The agency, Lucid Group Communications. M. Østergaard has received research
programme has reached the stage where support from AbbVie, BMS, Celgene,
quantifiable behavioural-change out- Competing interests Merck and Novartis; and consultancy
come metrics can be collected, through J.M. Álvaro-Gracia has received con- fees and/or speaker fees from AbbVie,
surveys on the web platform. Metrics sultancy and/or speaker fees from Abb- BMS, Boehringer-Ingelheim, Celgene,
are being collected on the number of Vie, BMS, Eli Lilly, MSD, Novartis, Eli Lilly, Hospira, Janssen, Merck,
times the web platform is accessed and Pfizer Inc, Roche, Sanofi and UCB. Novartis, Novo, Orion, Pfizer, Regen-
the eRA tools that are downloaded. Us- G.R. Burmester has received research eron, Roche, Sandoz, Sanofi and UCB.
ers are requested to share their percep- grants from Pfizer and UCB, and con- S. Ramiro has received research grants
tion of the eRA programme by complet- sultation fees from AbbVie, Gilead, and/or consultancy fees from AbbVie,
ing two anonymised surveys: one when Janssen, MSD, Novartis, Eli Lilly, Eli Lilly, MSD, Novartis and Sanofi
they first access the site and a second Pfizer, Roche and Sanofi. Genzyme.
when they return at a later date. Future N. Betteridge has received consultancy A. Rubbert-Roth has received hono-
plans for eRA include the development fees from Amgen, Eli Lilly, EULAR, raria for lectures and consultancy fees
of tools to support implementation of Global Alliance for Patient Access, from AbbVie, Amgen, BMS, Gilead,
best‑practice interventions in RA pa- Grunenthal, GSK, Heart Valve Voice Eli Lilly, MSD, Novartis, Roche, Sa-
tient care, including management of and Sanofi. nofi and UCB.
comorbidities, and provision of practi- J. Calvo Alén has received an unre- T. Stamm has received speaker fees
cal guidance for clinicians to advance stricted research grant from UCB, from AbbVie, Roche and Sanofi.

1064 Clinical and Experimental Rheumatology 2020

 Evolving the management of rheumatoid arthritis / G.R. Burmester et al.

Z. Szekanecz has received speaker pean chart review study on early rheumatoid A guide to using the Theoretical Domains
arthritis treatment patterns, clinical outcomes, Framework of behaviour change to investi-
fees, consultancy fees and/or research
and healthcare utilization. Rheumatol Int gate implementation problems. Implement
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Novartis, Pfizer, Roche, Sanofi and 10. HAUGEBERG G, HANSEN IJ, SOLDAL DM et 23. JACKSON C, ELIASSON L, BARBER N, WEIN-
UCB. al.: Ten years of change in clinical disease MAN J: Applying COM-B to medication ad-
status and treatment in rheumatoid arthritis: herence. A suggested framework for research
P.C. Taylor has received research grants results based on standardized monitoring of and interventions. The European Health Psy-
from Celgene, Galapagos, Janssen and patients in an ordinary outpatient clinic in chologist 2014; 16: 7‑17.
Eli Lilly, and consultation fees from southern Norway. Arthritis Res Ther 2015; 24. MICHIE S, JOHNSTON M, ABRAHAM C et
AbbVie, Biogen, Fresenius, Galapa- 17: 219. al.: Making psychological theory useful for
11. XIE W, LI J, ZHANG X et al.: Trends in the implementing evidence based practice: a
gos, Gilead, GSK, Janssen, Novartis, activity of rheumatoid arthritis as the conse- consensus approach. Qual Saf Health Care
Eli Lilly, Pfizer, Roche, Sanofi, Nordic quence of treat-to-target strategy: eight-year 2005; 14: 26-33.
Pharma and UCB. data from 2009 to 2016. Clin Exp Rheumatol 25. van der HEIJDE D, ALETAHA D, CARMONA
M. van de Laar has received consul- 2018; 36: 820-8. L et al.: 2014 Update of the EULAR stand-
12. TAYLOR PC, MOORE A, VASILESCU R, ALVIR ardised operating procedures for EULAR-
tancy fees, speaker fees and/or research J, TARALLO M: A structured literature review endorsed recommendations. Ann Rheum Dis
support from AbbVie, Eli Lilly, Pfiz- of the burden of illness and unmet needs in 2015; 74: 8-13.
er, Merck, Janssen Cilag and Sanofi patients with rheumatoid arthritis: a current 26. ROBERTSON R, JOCHELSON K: Interventions
Genzyme. perspective. Rheumatol Int 2016; 36: 685-95. that change clinician behaviour: mapping the
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al.: Drivers of patient global assessment in pa- https://www.kingsfund.org.uk/publications/
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