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EULAR/eumusc.net standards of care for rheumatoid arthritis: cross-sectional analyses of importance, level of implementation and care gaps experienced by patients and rheumatologists across 35 European countries
  1. Rachelle Meisters1,2,
  2. Polina Putrik2,3,
  3. Sofia Ramiro4,5,
  4. Monika Hifinger2,3,
  5. Andras P Keszei6,
  6. Yvonne van Eijk-Hustings3,
  7. Anthony D Woolf7,
  8. Josef S Smolen8,
  9. Tanja A Stamm9,
  10. Michaela Stoffer-Marx9,10,
  11. Till Uhlig11,
  12. Rikke Helene Moe11,
  13. Maarten de Wit12,
  14. Argjend Tafaj13,
  15. Vahan Mukuchyan14,
  16. Paul Studenic15,
  17. Patrick Verschueren16,
  18. Russka Shumnalieva17,
  19. Paraskevi Charalambous18,
  20. Jiří Vencovský19,
  21. Melpomeni Varvouni20,
  22. Mart Kull21,
  23. Kari Puolakka22,
  24. Laure Gossec23,24,
  25. Nino Gobejishvili25,
  26. Jacqueline Detert26,
  27. Prodromos Sidiropoulos27,
  28. Márta Péntek28,29,
  29. David Kane30,
  30. Carlo Alberto Scirè31,
  31. Uri Arad32,
  32. Daina Andersone33,
  33. Mart van de Laar34,35,
  34. Annette van der Helm-van Mil4,
  35. Piotr Głuszko36,
  36. Luís Cunha-Miranda37,
  37. Florian Berghea38,
  38. Nemanja S Damjanov39,
  39. Matija Tomšič40,
  40. Loreto Carmona41,
  41. Carl Turesson42,
  42. Adrian Ciurea43,
  43. Surayo Shukurova44,
  44. Nevsun Inanc45,
  45. Suzanne MM Verstappen46,47,
  46. Annelies Boonen2,3
  47. Working group
    1. 1 Health Services Research, Maastricht University, Maastricht, The Netherlands
    2. 2 Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands
    3. 3 Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center, Maastricht, The Netherlands
    4. 4 Rheumatology, Leiden University Medical Center, Leiden, The Netherlands
    5. 5 Rheumatology, Zuyderland Medical Center, Heerlen, The Netherlands
    6. 6 Center for Translational & Clinical Research Aachen (CTC‐A), Uniklinik RWTH Aachen University, Aachen, Germany
    7. 7 Bone and Joint Research Group, Royal Cornwall Hospital, Truro, UK
    8. 8 Division of Rheumatology, Department of Medicine, Medical University of Vienna, Vienna, Austria
    9. 9 Section for Outcomes Research, Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Vienna, Austria
    10. 10 Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Vienna, Austria
    11. 11 Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
    12. 12 EULAR Patient Research Partner, Zaltbommel, The Netherlands
    13. 13 Rheumatology Clinic, Medical University of Tirana, Tirana, Albania
    14. 14 Department of Rheumatology, Erebouni Medical Center, Yerevan, Armenia
    15. 15 Department of Internal Medicine 3, Division of Rheumatology, Medical University Vienna, Vienna, Austria
    16. 16 Rheumatology, University Hospitals Leuven, Leuven, Belgium
    17. 17 Clinic of Rheumatology, Department of Internal Medicine, Medical University-Sofia, Sofia, Bulgaria
    18. 18 Cyprus Society for Rheumatology, Nicosia, Cyprus
    19. 19 Institute of Rheumatology, Department of Rheumatology, Charles University, Prague, Czech Republic
    20. 20 Danish Hospital for Rheumatic Diseases, Sonderborg, Denmark
    21. 21 Department of Internal Medicine, Tartu University, Tartu, Estonia
    22. 22 Department of Medicine, Lappeenranta Central Hospital, Lappeenranta, Finland
    23. 23 INSERM, Sorbonne Universite, Paris, Île-de-France, France
    24. 24 Rheumatology, Hopital Universitaire Pitie Salpetriere, AP-HP, Paris, Île-de-France, France
    25. 25 Georgian Young Rheumatologists Union (SARG), Tbilisi, Georgia
    26. 26 Department of Rheumatology and Clinical Immunology, Charité - Universitätsmedizin Berlin, Berlin, Germany
    27. 27 Rheumatology, Allergy, Clinical Immunology, University of Crete, Thessaloniki, Greece
    28. 28 Department of Health Economics, Corvinus University of Budapest, Budapest, Hungary
    29. 29 Rheumatology, Flór Ferenc County Hospital, Kistarcsa, Hungary
    30. 30 Rheumatology, Trinity College Dublin, Dublin, Ireland
    31. 31 Epidemiology Unit, Italian Society for Rheumatology (SIR), Milan, Italy
    32. 32 Department of Rheumatology, Tel-Aviv Medical Center, Tel-Aviv, Israel
    33. 33 Rheumatology, Pauls Stradina Clinical University Hospital, Riga, Latvia
    34. 34 Arthritis Center @ Medisch Spectrum Twente, Enschede, The Netherlands
    35. 35 PHT, University of Twente, Enschede, The Netherlands
    36. 36 National Institute of Geriatrics, Rheumatology, and Rehabilitation, Warsaw, Poland
    37. 37 Rheumatology, Portuguese Institute of Rheumatology, Lisbon, Portugal
    38. 38 Department of Internal Medicine and Rheumatology, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
    39. 39 Rheumatology, University of Belgrade School of Medicine, Belgrade, Serbia
    40. 40 Department of Rheumatology, University Medical Centre Ljubljana, Ljubljana, Slovenia
    41. 41 Instituto de Salud Musculoesquelética, Madrid, Spain
    42. 42 Rheumatology, Department of Clinical Sciences, Lund University, Malmö, Sweden
    43. 43 Rheumatology, University Hospital Zurich, Zurich, Switzerland
    44. 44 Internal Medicine, Medical Science Academy, Dushanbe, Tajikistan
    45. 45 Division of Rheumatology, School of Medicine, Marmara University, Istanbul, Turkey
    46. 46 Centre for Epidemiology Versus Arthritis, Centre for Musculoskeletal Research, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK
    47. 47 NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, United Kingdom
    1. Correspondence to Rachelle Meisters, Health Services Research, Maastricht University, Maastricht 6200 MD, Netherlands; r.meisters{at}maastrichtuniversity.nl

    Abstract

    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.

    • arthritis
    • rheumatoid
    • health services research
    • outcome and process assessment
    • health care
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    Footnotes

    • 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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