EULAR Sjögren's syndrome disease activity index (ESSDAI): a user guide.
The EULAR Sjögren's syndrome (SS) disease activity index (ESSDAI) is a systemic disease activity index that was designed to measure disease activity in patients with primary SS. With the growing use of the ESSDAI, some domains appear to be more challenging to rate than others. The ESSDAI is now in use as a gold standard to measure disease activity in clinical studies, and as an outcome measure, even a primary outcome measure, in current randomised clinical trials. Therefore, ensuring an accurate and reproducible rating of each domain, by providing a more detailed definition of each domain, has emerged as an urgent need. The purpose of the present article is to provide a user guide for the ESSDAI. This guide provides definitions and precisions on the rating of each domain. It also includes some minor improvement of the score to integrate advance in knowledge of disease manifestations. This user guide may help clinicians to use the ESSDAI, and increase the reliability of rating and consequently of the ability to detect true changes over time. This better appraisal of ESSDAI items, along with the recent definition of disease activity levels and minimal clinically important change, will improve the assessment of patients with primary SS and facilitate the demonstration of effectiveness of treatment for patients with primary SS.
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Raphaèle
R
Seror
Rheumatology Department , University Hospitals Birmingham NHS Foundation Trust , Birmingham , UK.
Simon J
SJ
Bowman
Laboratory of Autoimmune Diseases "Josep Font", CELLEX-IDIBAPS, Department of Autoimmune Diseases , ICMiD, Hospital Clinic , Barcelona , Spain.
Pilar
P
Brito-Zeron
Department of Rheumatology , Skane University Hospital Malmö, Lund University , Malmo , Sweden.
Elke
E
Theander
Department of Rheumatology and Clinical Immunology , University of Groningen, University Medical Center Groningen , Groningen , The Netherlands.
Hendrika
H
Bootsma
Department of Pathophysiology , School of Medicine, University of Athens , Athens , Greece.
Athanasios
A
Tzioufas
Rheumatology , Centre National de Référence des Maladies Auto-Immunes Rares, INSERM UMRS_1109, Fédération de Médecine Translationnelle de Strasbourg (FMTS), Strasbourg University Hospital, Université de Strasbourg , Strasbourg , France.
Jacques-Eric
JE
Gottenberg
Laboratory of Autoimmune Diseases "Josep Font", CELLEX-IDIBAPS, Department of Autoimmune Diseases , ICMiD, Hospital Clinic , Barcelona , Spain.
Manel
M
Ramos-Casals
Rheumatology Department , Charité, University Hospital , Berlin , Germany.
Thomas
T
Dörner
Center of Clinical Epidemiology , Hôpital Hôtel Dieu , Paris , France ; INSERM U738, Université Paris-René Descartes , Paris , France.
Philippe
P
Ravaud
Sections of Rheumatology , Instituto San Giuseppe, Como and Casa di Cura di Lecco , Lecco , Italy.
Claudio
C
Vitali
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Xavier
X
Mariette
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Karsten
K
Asmussen
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Soren
S
Jacobsen
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Elena
E
Bartoloni
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Roberto
R
Gerli
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Johannes Wj
JW
Bijlsma
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Aike A
AA
Kruize
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Stefano
S
Bombardieri
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Arthur
A
Bookman
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Cees
C
Kallenberg
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Petra
P
Meiners
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Johan G
JG
Brun
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Roland
R
Jonsson
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Roberto
R
Caporali
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Steven
S
Carsons
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Salvatore
S
De Vita
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Nicoletta
N
Del Papa
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Valerie
V
Devauchelle
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Alain
A
Saraux
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Anne-Laure
AL
Fauchais
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Jean
J
Sibilia
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Eric
E
Hachulla
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Gabor
G
Illei
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
David
D
Isenberg
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Adrian
A
Jones
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Menelaos
M
Manoussakis
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Thomas
T
Mandl
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Lennart
L
Jacobsson
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Frederic
F
Demoulins
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Carlomaurizio
C
Montecucco
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Wan-Fai
WF
Ng
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Sumusu
S
Nishiyama
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Roald
R
Omdal
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Ann
A
Parke
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Sonja
S
Praprotnik
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Matjia
M
Tomsic
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Elizabeth
E
Price
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Hal
H
Scofield
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Kathy
K
L Sivils
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Josef
J
Smolen
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Roser Solans
RS
Laqué
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Serge
S
Steinfeld
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Nurhan
N
Sutcliffe
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Takayuki
T
Sumida
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Guido
G
Valesini
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Valeria
V
Valim
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Frederick B
FB
Vivino
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
Cristina
C
Vollenweider
Disease Activity; Outcomes research; Sjögren's Syndrome