Rheumatoid Arthritis (RA) remains a significant health concern across Europe, impacting millions and necessitating standardized, high-quality care. The EUMUSC.net project, an initiative funded by the European Union (EU) Commission and the European League Against Rheumatism (EULAR), was established to address this need. Its core mission: to create equitable standards for musculoskeletal health throughout all EU member states. A critical component of this project was the development of evidence-based, patient-centered Standards of Care (SOC) for RA. These standards, designed to be easily understood by both patients and healthcare professionals across Europe, serve as a vital Care Tool Eu Rheumatoid sufferers can rely on.
Understanding the Need for Standardized RA Care in the EU
Rheumatoid Arthritis, a chronic autoimmune disease, is characterized by inflammation of the joints, leading to pain, stiffness, and potential joint damage. Its prevalence across Europe ranges from 0.3% to 1% of the population, with women being disproportionately affected. The impact of RA extends beyond physical health, significantly affecting daily functioning, quality of life, and employment opportunities for those living with the condition. Effective management of RA is crucial, with the primary treatment goal being the control of disease activity and the minimization of long-term complications.
While clinical practice guidelines for RA exist in many European countries, these guidelines often vary considerably in their recommendations for pharmacological and non-pharmacological treatments, lifestyle advice, and patient education. This variation can lead to disparities in care quality and patient outcomes across different regions. Furthermore, the extent to which patients are informed about these guidelines, which directly pertain to their care, has been unclear.
The EUMUSC.net project, through its work package 5, directly addressed these issues. It focused on developing a unified set of European Standards of Care (SOC) for individuals with RA, drawing upon existing national and international guidelines. These SOC are not intended as rigid algorithms but rather as a framework defining essential services and patient rights. They encompass disease management, access to information, support systems, and the knowledge patients should possess to actively participate in their care. The SOC consider structural aspects of healthcare delivery (e.g., availability of specialists), processes (e.g., regular assessments), and desired outcomes (e.g., disease activity control). Ultimately, these standards empower patients to take a more active role in managing their condition and advocate for their healthcare needs.
This initiative employed a rigorous methodology to analyze existing RA guidelines and, through a Delphi technique, developed a patient-centered SOC framework that is applicable and acceptable across the diverse healthcare landscapes of European countries.
Methodology: Crafting Patient-Centered Standards of Care
The development of the European Standards of Care for Rheumatoid Arthritis followed a structured, evidence-based approach, incorporating both literature review and expert consensus.
Comprehensive Review and Appraisal of Existing Guidelines
A systematic literature review was conducted, encompassing major medical databases such as PubMed and CINAHL, as well as broader internet searches using Google. The search strategy targeted clinical practice guidelines, recommendations, and standards of care for rheumatoid arthritis published between May 2010 and February 2011. Keywords included terms like “clinical practice guideline,” “rheumatoid arthritis,” “standard of care,” and the names of European countries. Reference lists of retrieved documents and guideline registers were also meticulously examined to ensure comprehensive coverage.
To further enrich the review, national rheumatology societies, health professional associations, and patient organizations across 44 European countries were contacted. They were asked to contribute any relevant published or unpublished documents related to RA care guidelines.
Inclusion criteria for guidelines were stringent, focusing on documents published after January 2002, specifically addressing RA treatment, and clearly designated as guidelines or recommendations with full text available in English or German. When multiple versions of a guideline existed, the most recent version was prioritized.
The methodological quality of the acquired guidelines was then rigorously assessed using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument. This validated tool evaluates the rigor and transparency of guideline development. Only guidelines achieving a high overall assessment score (between four and seven) were included in the subsequent analysis, ensuring that the SOC development was based on methodologically sound recommendations.
Following quality appraisal, all recommended interventions for RA treatment were extracted from the selected guidelines. These interventions were meticulously analyzed, noting details such as timing, intensity, and frequency of application. This detailed extraction formed the foundation for the development of the Standards of Care.
Delphi Consensus Process: Achieving Expert and Patient Agreement
To translate the extracted interventions into a cohesive set of Standards of Care, a three-round Delphi exercise was conducted. This iterative process is designed to achieve consensus among a panel of experts through structured communication and feedback.
The expert panel comprised 21 individuals, including rheumatologists, rheumatology health professionals, rehabilitation specialists, and crucially, patient research partners. All experts possessed extensive experience in clinical practice, scientific research, or living with rheumatoid arthritis.
Delphi Round 1: The initial round involved a face-to-face meeting in Vienna. The 49 interventions extracted from the guidelines were presented to the expert panel. Through discussion and collaborative sorting, these interventions were categorized into six key groups: pharmacological treatment, monitoring, lifestyle interventions, surgery, education/information, and non-pharmacological treatment. This categorization process resulted in a draft version of 56 proposed items for the Standards of Care.
Delphi Round 2: The draft SOC items were circulated electronically to all 21 experts for review and comment. A significant number of comments (250) were received, demonstrating active engagement from the panel. The lead author meticulously reviewed and integrated these comments, refining the wording and structure of the items. This iterative refinement process led to a reduction in the number of statements to 37, reflecting a move towards greater clarity and conciseness.
Delphi Round 3: A revised draft, incorporating feedback from the second round, was circulated for the third Delphi round. In this round, experts were asked to rate the importance of each SOC item using a scale of 1 to 3 (1=”must have,” 2=”would be nice to have,” 3=”not important”). They also provided further comments (202 in total) to ensure precision and applicability. Following the methodology of Freel et al, a final voting was conducted where panelists scored each SOC on a scale of 0 to 10 (0=”totally disagree,” 10=”agree completely”) to quantify the level of agreement.
This rigorous three-round Delphi process, incorporating expert opinion and patient perspectives, ensured that the final Standards of Care were evidence-based, patient-centered, and broadly supported by the rheumatology community.
Key Outcomes: 16 Patient-Centered Standards of Care and a Practical Checklist
The Delphi process culminated in the development of 16 core Standards of Care (SOC) for Rheumatoid Arthritis. These standards, presented in Table 1 of the original publication, achieved a high level of agreement among the expert panel, with scores ranging from 8.7 to 9.9 out of 10. Notably, 21 of the initially proposed 37 SOC items were excluded based on expert ratings in the third Delphi round, ensuring that the final set was focused and prioritized.
Table 1: Standards of Care (SOC) for People with Rheumatoid Arthritis
| SOC for people with rheumatoid arthritis (RA) | Level of agreement |
|---|---|
| SOC 1: People with symptoms of RA should have timely access to a clinician/health professional competent in making a (differential) diagnosis (6 weeks according to European League Against Rheumatism (EULAR) recommendations). | 9.9 |
| SOC 2: People with RA should be given relevant information and education about – ▸their disease – ▸its management – ▸and all aspects of living with and managing their RA, in written form and in a format suited and tailored to the individual, in a timely fashion appropriate to their needs. | 9.7 |
| SOC 3: People with RA should receive a treatment plan developed individually between them and their clinician at each visit. | 9.2 |
| SOC 4: At the start of any disease-specific treatment, people with RA should be fully educated about the expected benefits and any potential risks, and fully evaluated to assess both clinical status and safety aspects. | 9.6 |
| SOC 5: People with RA should be fully assessed for symptoms, disease activity, damage, comorbidity (including assessment for cardiovascular disease risk factors) and function at diagnosis; these assessments should also be done annually; if disease is not within target, clinical assessment should be done at least 3-monthly (all clinical variables) and possibly more frequently upon significant worsening. | 9.5 |
| SOC 6: People with RA should have rapid access to care when they experience significant worsening of the disease. | 9.7 |
| SOC 7: People with RA should be treated with a disease modifying anti-rheumatic drug (DMARD) as soon as the diagnosis is made. | 9.7 |
| SOC 8: If the target of low disease activity or remission is not achieved using a synthetic DMARD (usually being methotrexate), treatment should be revaluated at least every 3 months. | 9.4 |
| SOC 9: People with RA should be evaluated for pain, and relief of pain associated with RA should be considered. | 9.3 |
| SOC 10: People with RA who have residual joint problems despite state-of-art pharmacological (including intra-articular) and non-pharmacological therapy should be assessed by an orthopaedic surgeon within 3 months from recognition of the refractoriness of the problem, especially if there is joint damage/soft tissue problems that might likely be solved by protective or reconstructive surgery. | 8.7 |
| SOC 11: People with RA should have access to evidence-based pharmacological and non- pharmacological treatment. | 9.7 |
| SOC 12: People with RA should have access to a specialised health professional to receive assessment, advice and training in all matters related to their disease. | 9.4 |
| SOC 13: People with RA should understand the benefit of exercises and physical activity and should be advised to exercise appropriately. | 9.5 |
| SOC 14: People with RA should receive information, advice and training on joint protection and ergonomic principles as well as activity-based methods to enhance functioning in daily life and participation in social roles. They should receive information, advice and training on splints, aids, devices and other products for environmental adaptations. | 9.3 |
| SOC 15: People with RA should receive information and advice about – ▸a healthy lifestyle (such as discontinuation of all types of tobacco use, balanced use of alcohol, physical activity, healthy diet, management of sleep disturbance if necessary) – ▸prevention of accidents and injuries, – ▸support groups and patient organisations, – ▸when to think about surgery and – ▸additional treatment options provided that some people might find useful. | 9.3 |
| SOC 16: People with RA who wish to try alternative therapies that some people found symptomatically beneficial, should be informed about the limited evidence. | 8.9 |
To enhance patient accessibility and understanding, a lay version of the SOC was developed in the form of a checklist (Table 2 of the original publication). This checklist translates the formal standards into patient-friendly questions, enabling individuals with RA to actively monitor and engage with their care. For example, SOC 3, “People with RA should receive a treatment plan developed individually between them and their clinician at each visit,” is translated into the checklist question: “Have I received a treatment plan which includes an explanation of my management, expected goals and outcomes and important contact details?”.
Table 2: Checklist for Patients with Rheumatoid Arthritis
| What this means for you and your rheumatoid arthritis (RA)… |
|---|
| 1: Was my RA diagnosed by a specialised health professional within 6 weeks of onset of symptoms? |
| 2: Do I understand my disease, my role in its management and the role of health professionals? Have I been given information in different formats and/or education about my disease? Have I been given information and/or education about treatments, their benefits and risks? Have I been given information and education relevant to my needs, that is, what to do if my disease is worsening, in case of pain and adverse reactions on drugs? Have I been given information about, and given contact details of, relevant patient charities and organisations which are considered to be trusted sources of evidence-based information? |
| 3: Have I received a treatment plan which includes an explanation of my management, expected goals and outcomes and important contact details? |
| 4: Was I informed about expected benefits and potential risks of treatment? Was I assessed for clinical status and safety before the treatment was started? Was I informed about vaccinations? |
| 5: Have I received a schedule of regular assessments of my disease—the symptoms, disease activity and of what I can do? |
| 6: Have I been informed when, how and who I can contact in case my disease is worsening? |
| 7: Am I receiving a disease modifying anti-rheumatic drug, and if not, do I understand why not? |
| 8: If my target of low disease activity or remission is not achieved, is my treatment reappraised at least every 3 months? |
| 9: Do I know how to control pain associated with my RA? |
| 10: Have I been informed about the options of surgery, and have the benefits and risks been explained? |
| 11: Do I have access to pharmacological and non-pharmacological treatments according to my needs? |
| 12: Do I have the opportunity to receive support if needed from health professionals, such as rheumatologist, dietician, general practitioner, nurse, occupational therapist, physiotherapist, psychologist and social worker? Have I been offered information about how, why and when to contact different members of the multidisciplinary team as soon as possible after my diagnosis was made? |
| 13: Have I been informed about physical activity and exercises specific for me? |
| 14: Have I received information and, if necessary, advice and training on aids, devices and ergonomic principles to enhance function in daily life and participation in social roles? |
| 15: Have I been informed about a healthy lifestyle? |
| 16: Have I been informed about alternative therapies and the current (limited) evidence available to make an informed treatment decision? |
This checklist, developed in collaboration with patient research partners, is intended to be a valuable care tool eu rheumatoid patients can utilize to ensure they are receiving care that aligns with European standards. It is designed to empower patients to engage in informed discussions with their healthcare providers and advocate for their needs.
Discussion: Towards Unified and Patient-Empowered RA Care in Europe
This project represents a significant step towards harmonizing the care of Rheumatoid Arthritis across Europe. By developing a common set of Standards of Care and translating them into a patient-friendly checklist, the EUMUSC.net project addresses critical gaps in healthcare delivery.
A major barrier to the widespread adoption of guidelines and standards is the limited availability of high-quality documents in languages other than English. Recognizing this, the European Standards of Care for RA have been translated into all 23 official EU languages. This multilingual accessibility is a crucial factor in facilitating implementation across diverse healthcare systems and ensuring that these standards reach both healthcare professionals and patients throughout Europe. Providing evidence-based information in multiple languages is a cost-effective strategy with the potential for substantial impact on healthcare equity.
The development process itself faced challenges, primarily in achieving consensus on wording that was universally applicable across diverse European healthcare contexts. Variations in healthcare professional roles and scopes of practice across countries, as well as the need to balance specificity with broad applicability, required careful consideration and compromise during the Delphi process.
While this study has limitations, including the restriction of guideline review to English and German documents and the limited number of patient research partners, it provides a valuable framework for unified RA care in Europe. The project did not re-examine the underlying evidence base of the guidelines but rather focused on synthesizing existing high-quality recommendations into a practical set of standards. Future research should focus on evaluating the implementation and impact of these Standards of Care on patient outcomes and healthcare delivery across Europe.
Building upon these Standards of Care, quality indicators have been developed in a related EUMUSC.net work package, providing tools for monitoring and improving RA care quality. The Standards of Care and related resources are publicly available on the EUMUSC.net website (http://www.eumusc.net), offering a platform for ongoing feedback and potential future updates as the evidence base evolves.
In conclusion, this EU-funded initiative has successfully developed a set of evidence-based Standards of Care for Rheumatoid Arthritis, designed to be accessible and understandable for both healthcare providers and patients across all EU languages. These standards, particularly the patient checklist, serve as a vital care tool eu rheumatoid patients can use to navigate their care, promote shared decision-making, and ultimately contribute to more consistent and equitable treatment approaches for RA throughout Europe.
Supplementary Material
Web appendix: annrheumdis-2013-203743-s1.pdf
Web figure: annrheumdis-2013-203743-s2.pdf
Web table: annrheumdis-2013-203743-s3.pdf
Footnotes
Contributors: All persons contributing to this work are listed in online supplementary appendix A, “Expert Panel”.
Funding: This project was funded by the European Community (EC Community Action in the Field of Health 2008–2013) and by the European League Against Rheumatism (EULAR) (grant number 20081301EU). The views of the funding body did not influence the content of the work.
Competing interests: AnB has received research grants from AbbVie, Merck, Amgen and an educational grant from Pfizer; none of them relates to this work. IFP has received speaker fees from AbbVie, Pfizer and UCB. JS has received honoraria from AbbVie, Amgen, BMS, Wyeth, Jansen, Roche, Schering-Plough and Sanofi-Aventis. TS has received speaker fees from UCB, AbbVie and MSD. MS has received speaker fees from MSD.
Provenance and peer review: Not commissioned; externally peer reviewed.
References
(References would be listed here as in the original article)
Associated Data
Supplementary Materials
Web appendix: annrheumdis-2013-203743-s1.pdf
Web figure: annrheumdis-2013-203743-s2.pdf
Web table: annrheumdis-2013-203743-s3.pdf
