Objective As part of European League against Rheumatism (EULAR)/European Musculoskeletal Conditions Surveillance and Information Network, 20 user-focused standards of care (SoCs) for rheumatoid arthritis (RA) addressing 16 domains of care were developed. This study aimed to explore gaps in implementation of these SoCs across Europe.
Methods Two cross-sectional surveys on the importance, level of and barriers (patients only) to implementation of each SoC (0–10, 10 highest) were designed to be conducted among patients and rheumatologists in 50 European countries. Care gaps were calculated as the difference between the actual and maximum possible score for implementation (ie, 10) multiplied by the care importance score, resulting in care gaps (0–100, maximal gap). Factors associated with the problematic care gaps (ie, gap≥30 and importance≥6 and implementation<6) and strong barriers (≥6) were further analysed in multilevel logistic regression models.
Results Overall, 26 and 31 countries provided data from 1873 patients and 1131 rheumatologists, respectively. 19 out of 20 SoCs were problematic from the perspectives of more than 20% of patients, while this was true for only 10 SoCs for rheumatologists. Rheumatologists in countries with lower gross domestic product and non-European Union countries were more likely to report problematic gaps in 15 of 20 SoCs, while virtually no differences were observed among patients. Lack of relevance of some SoCs (71%) and limited time of professionals (66%) were the most frequent implementation barriers identified by patients.
Conclusions Many problematic gaps were reported across several essential aspects of RA care. More efforts need to be devoted to implementation of EULAR SoCs.
- health services research
- outcome and process assessment
- health care
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Handling editor Dimitrios T Boumpas
Twitter @Stiddyo, @sidiropro, @rthritis, @carmona_loreto
RM and PP contributed equally.
Collaborators Working group: Miroslav Mayer (Cyprus), Inessa Samko (Russia), Leszek Roszkowski (Poland), Zumrad Hamroeva (Tajikistan), Antonella Celano (Italy), Šárka Forejtová (Czech Republic), Tuuluki Sokka (Finland), Lars Hagen (Germany), Johan Joly (Belgium), Ivica Jeremic (Serbia), Bernadette Rojkovich (Hungary), Laurence Carton and Sonia Tropé (France), Randi Petersen and Kim Hørslev-Petersen (Denmark), Yagcı I (Turkey), Dr. Ermir Tafaj and Dr Edi Rembeci (Albania).
Contributors AB conceived the idea; AB, SR, MH, PP, YvE-H, AW, JS, TAS, MS-M, TU, RHM and MdW contributed to the design of the work. Country collaborators (AT, VM, PS, PV, RS, PC, JV, MV, MK, KP, LG, NG, JD, PS, MP, DK, CAS, UA, DA, MvdL, AvdH-vM, PG, LCM, FB, NSD, MT, LC, CT, AC, SS, NI and SMMV) collected data and assisted in the interpretation of the findings; RM, AB, SR and PP performed analyses; APK provided statistical advice. RM and PP drafted the first draft, which was critically reviewed and approved for submission by all authors.
Funding SMMV is supported by the NIHR Manchester Biomedical Research Centre and Versus Arthritis (grant number 20380).
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Ethics approval This study was approved by the medical–ethical committee from Maastricht University Medical Center (METC azM/UM), number 15-4-131. Board of Directors Maastricht University Medical Center. Local ethical review boards provided additional approval in countries where it was required. The local principal investigator was responsible for obtaining such approval.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request. Data can be shared upon request.
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