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
Rachelle Meisters
(1)
,
Polina Putrik
(1)
,
Sofia Ramiro
(2, 3)
,
Monika Hifinger
(1)
,
Andras P Keszei
,
Yvonne Van Eijk-Hustings
(1)
,
Anthony D Woolf
,
Josef S Smolen
(4)
,
Tanja A Stamm
(4)
,
Michaela Stoffer-Marx
(4)
,
Till Uhlig
(5)
,
Rikke Helene Moe
(5)
,
Maarten Wit
(6)
,
Argjend Tafaj
(7)
,
Vahan Mukuchyan
,
Paul Studenic
(4)
,
Patrick Verschueren
,
Russka Shumnalieva
(8)
,
Paraskevi Charalambous
(9)
,
Jiř'I Vencovský
(10)
,
Melpomeni Varvouni
,
Mart Kull
(11)
,
Kari Puolakka
,
Laure Gossec
(12, 13)
,
Nino Gobejishvili
,
Jacqueline Detert
,
Prodromos Sidiropoulos
(14)
,
Márta Péntek
(15, 16)
,
David Kane
,
Carlo Alberto Scirè
,
Uri Arad
,
Daina Andersone
(17)
,
Mart van De Laar
,
Annette van Der Helm-van Mil
,
Piotr Gluszko
(18)
,
Lu'Is Cunha-Miranda
(19)
,
Florian Berghea
(20)
,
Nemanja S Damjanov
,
Matija Tomšič
,
Loreto Carmona
(21)
,
Carl Turesson
(22)
,
Adrian Ciurea
,
Surayo Shukurova
(23)
,
Nevsun Inanc
(24)
,
Suzanne Mm Verstappen
,
Annelies Boonen
(25)
1
MUMC -
Maastricht University Medical Centre
2 LUMC - Leiden University Medical Center
3 Zuyderland Hospital [Heerlen, The Netherlands]
4 Medizinische Universität Wien = Medical University of Vienna
5 Diakonhjemmet Hospital
6 VU University Medical Center [Amsterdam]
7 University of Tirana
8 Medical University of Sofia [Bulgarie]
9 Cyprus Society for Rheumatology
10 UK - Univerzita Karlova [Praha, Česká republika] = Charles University [Prague, Czech Republic]
11 University of Tartu
12 iPLESP - Institut Pierre Louis d'Epidémiologie et de Santé Publique
13 CHU Pitié-Salpêtrière [AP-HP]
14 UOC - University of Crete [Heraklion]
15 Rheumatology
16 Corvinus University of Budapest
17 Riga East University Hospital
18 Medical University of Warsaw - Poland
19 Sociedade Portuguesa de Reumatologia [Lisboa]
20 UMPCD - University of Medicine and Pharmacy “Carol Davila” Bucharest
21 InMusc - Instituto de Salud Musculoesqueletica
22 Skane University Hospital [Malmo]
23 Medical Science Academy, Dushanbe
24 Marmara University [Kadıköy - İstanbul]
25 Maastricht University [Maastricht]
2 LUMC - Leiden University Medical Center
3 Zuyderland Hospital [Heerlen, The Netherlands]
4 Medizinische Universität Wien = Medical University of Vienna
5 Diakonhjemmet Hospital
6 VU University Medical Center [Amsterdam]
7 University of Tirana
8 Medical University of Sofia [Bulgarie]
9 Cyprus Society for Rheumatology
10 UK - Univerzita Karlova [Praha, Česká republika] = Charles University [Prague, Czech Republic]
11 University of Tartu
12 iPLESP - Institut Pierre Louis d'Epidémiologie et de Santé Publique
13 CHU Pitié-Salpêtrière [AP-HP]
14 UOC - University of Crete [Heraklion]
15 Rheumatology
16 Corvinus University of Budapest
17 Riga East University Hospital
18 Medical University of Warsaw - Poland
19 Sociedade Portuguesa de Reumatologia [Lisboa]
20 UMPCD - University of Medicine and Pharmacy “Carol Davila” Bucharest
21 InMusc - Instituto de Salud Musculoesqueletica
22 Skane University Hospital [Malmo]
23 Medical Science Academy, Dushanbe
24 Marmara University [Kadıköy - İstanbul]
25 Maastricht University [Maastricht]
Andras P Keszei
- Fonction : Auteur
Anthony D Woolf
- Fonction : Auteur
Vahan Mukuchyan
- Fonction : Auteur
Patrick Verschueren
- Fonction : Auteur
Melpomeni Varvouni
- Fonction : Auteur
Kari Puolakka
- Fonction : Auteur
Nino Gobejishvili
- Fonction : Auteur
Jacqueline Detert
- Fonction : Auteur
David Kane
- Fonction : Auteur
Carlo Alberto Scirè
- Fonction : Auteur
Uri Arad
- Fonction : Auteur
Mart van De Laar
- Fonction : Auteur
Annette van Der Helm-van Mil
- Fonction : Auteur
Nemanja S Damjanov
- Fonction : Auteur
Matija Tomšič
- Fonction : Auteur
Adrian Ciurea
- Fonction : Auteur
Suzanne Mm Verstappen
- Fonction : Auteur
Résumé
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\textendash 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\textendash 100, maximal gap). Factors associated with the problematic care gaps (ie, gap≥q30 and importance≥q6\,and implementation<6) and strong barriers (≥q6) 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.