EULAR - Standing Committee on Epidemiology and Health Services Research: Current Activities

Standing Committee on Epidemiology and Health Services Research

Current Activities

The standing committee has a number of major activities under various stages of progress.

Recently completed activities

Task Force on Measurement of Work-related Psychosocial Risk Factors for Musculoskeletal Disorders
A Task Force (Convenor Gary MacFarlane, Aberdeen) completed its task on recommendations regarding the desired approach to investigating the contribution of psychosocial factors in the workplace to the development of musculoskeletal disorders. This work has now been published in the Annals of Rheumatic Diseases ((Macfarlane GJ, Pallewatte N, Paudyal P, Blyth FM, Coggon D, Crombez G, Linton S, Leino-Arjas P, Silman AJ, Smeets RJ, van der Windt D. Evaluation of work-related psychosocial factors and regional musculoskeletal pain: results from a EULAR Task Force. Ann Rheum Dis 2009 Jun;68(6):885-91).

Ongoing Activities

Task force on new Criteria for Rheumatoid Arthritis
A major activity has been on the joint ACR/EULAR initiative on developing new criteria for rheumatoid arthritis appropriate for newly presenting patients with inflammatory polyarthritis. The final agreed criteria set was presented at ACR annual meeting in Philadelphia.

Three papers on the 2010 American College of Rheumatology / European League Against Rheumatism Classification Criteria for Rheumatoid Arthritis were completed and submitted: In the first paper (Funovits et al.), a data driven approach was applied to identify in patients newly presenting with undifferentiated inflammatory synovitis those key clinical and laboratory parameters that classify an individual as having RA, based on the decision to start disease modifying therapy. In this first phase, 9 early arthritis cohorts were analysed for variables and domains predicting treatment with methotrexate during the first year after enrolment. A second paper (Neogi et al.) describes the process of achieving expert consensus on the clinical and laboratory variables that should contribute to the final criteria set. There was consensus that the new classification criteria should be applied to individuals with undifferentiated inflammatory arthritis in whom at least one joint is deemed to be swollen, indicating definite synovitis, by an expert assessor. Four domains of importance were identified: number and site of joint involvement, serologic abnormality, acute phase response, and duration of symptoms in the involved joints. These domains were consistent with the factors identified in the Phase 1 data-driven-approach. A third paper (Aletaha et al.) describes the final set of criteria: the classification as definite RA is based on the confirmed presence of synovitis in at least one joint, no alternative diagnosis better explaining the synovitis, and achieving a total score of 6 or greater (out of 10) from the individual scores in four domains: number and site of involved joints (5 levels; range 0- 5), serological abnormality (3 levels; range 0-3), elevated acute phase response (2 levels; range 0-1) and symptom duration (2 levels; range 0-1).

Database on burden of rheumatic diseases and their management
The Standing Committee on Epidemiology closely collaborates with the EU and EULAR funded project "European Musculoskeletal Conditions Surveillance and Information Network" (PI: Tony Woolf, Truro, UK). This research network has its kick-off meeting in March 2010. It will establish a database on musculoskeletal health in Europe, develop standards of care, health care quality indicators, identify barriers and facilitators to better musculoskeletal health and integrate all this information in a European musculoskeletal surveillance and information network (EUMUSC.NET).The project will also link with an international World Bank initiative updating data used in the Global Burden of Disease project.

Task Force on Requirements for Observational Treatment Registers
This Task Force under the joint leadership of Johan Askling (Stockholm) and Will Dixon (Manchester) was established in 2008 and - after two fasce-to-face meetings in Zurich - completed a stategy paper on points to consider when establishing or analysing data from a biologics register. The Taskforce encompassed eleven scientists from European Rheumatology drug registers. Through informal inventory of critical elements in the establishment of existing rheumatoid arthritis drug registers, of analytic strategies used, and of limitations of their results, several "points to consider" - beyond established generic guidelines for observational registers/studies but with particular relevance to biologics registers on safety in Rheumatology - were assembled. For each "point to consider", contextual and methodological background, and examples, were compiled. For the establishment of new drug registers, a set of seven points to consider was assembled with a focus on purpose, population to be targeted, data collection, handling and storage as well as ethical and legal considerations. For analysis and reporting, nine points to consider were assembled (setting, participant, variable, statistical method, descriptive data, outcome data, main results, other analyses and limitations). Thoughtful design and planning before the establishment of biologics registers will increase their sustainability, versatility and raw-data quality. Harmonisation of analyses and reporting from such registers will improve interpretation of drug safety studies. This paper is accepted for publication by the Annals of the Rheumatic Diseases.

The second phase of the project is an implementation workshop in summer/autumn 2010 aimed at rolling out the plans to a wider community.

Evaluation of Best Practice for Reducing Delay in Diagnosis and Treatment of Inflammatory Arthritis
All health care systems face the problem of delays between onset of arthritis and being seen by an appropriate specialist service. Such delays, in the current therapeutic environment, result in an important number of individuals with an avoidable adverse outcome. At the joint ACR-EULAR quality leadership meeting in June 2008 it was recommended that a group of methodologists should meet in a one-day workshop to determine the feasibility of developing a tool to reduce wait times to treatment by improving patient awareness of, and earlier diagnosis of, inflammatory arthritis. The workshop should include international representation and focus on developing a protocol to develop such a tool, taking into consideration the target audience, which should include primary care physicians and people with inflammatory joint complaints. Feasibility both of development of such a tool that could transcend different health care systems, as well as feasibility of implementation of the tool, would be considered. The joint conveners of the workshop were Gillian Hawker (ACR) and Alan Silman (EULAR). This workshop was held on May 8th 2009 in Chicago.

The meeting was centered on 3 themes:
1. Delays in patients seeking care
2. Delays in referral from primary to specialist care
3. Constraints to reducing delays

A 3 phase programme of work was proposed to address the following question: "What strategies/practices have been shown to be efficacious or effective in reducing time to diagnosis or treatment for people with early inflammatory arthritis, EIA?" A sub-theme will be to evaluate the level of evidence to support early referral to rheumatologic care versus management by other physician providers most typically in primary care.

Phase 1: Methodological consensus to inform subsequent systematic literature review. (Spring 2010)
Phase 2: Systematic review of the literature on best practices to reduce delay in diagnosis and treatment for individuals with early inflammatory arthritis (EIA). (April to Sept 2010)
Phase 3: Development of evidence-based recommendations on best practice. (Fall 2010)

EULAR perspectives in patient-reported outcomes
In November 2009, a workshop on EULAR's perspectives in patient-reported outcomes (PROs) was held in Zurich. Experts in the field met for one day in order to identify where EULAR's priorities should be in this field. The main aim of the workshop was to define what should be the role of EULAR in supporting research and standardisation in the field of patient-reported outcomes.

12 experts from rheumatology/epidemiology and two patient representatives participated in the meeting.
The workshop participants decided to apply for EULAR support for a Task Force which should have the following tasks:

to identify how a Clearing House on PROs could be implemented within EULAR and to prepare the methodology for such a "tool box" including execution in one example
to prepare a research agenda on cross-cultural validation and further development of PROs including the definition of gaps, priorities and prerequisites for funding

The Task Force should start working in autumn 2010. It is expected that it would need two face-to-face meetings.