Original articleThe DESIR cohort: A 10-year follow-up of early inflammatory back pain in France: Study design and baseline characteristics of the 708 recruited patients
Introduction
The group of diseases collectively now labeled spondyloarthritis consists of several disorders: psoriatic arthritis, reactive arthritis, arthritis related to inflammatory bowel disease, a subgroup of juvenile chronic arthritis and ankylosing spondylitis, with the last-mentioned being the prototype of spondyloarthritis [1], [2], [3]. The different clinical manifestations observed in these disorders include spinal (axial) manifestations, peripheral arthritis, enthesitis and extra-articular features such as uveitis, psoriasis and inflammatory bowel disease. The clinical argument in favor of this concept is the fact that such disorders may occur simultaneously or sequentially in a same patient or in a member of his/her family. In addition, some of the clinical characteristics of these diseases such as eye involvement and enthesitis are similar whatever the diagnosis [1], [2]. An experimental argument in favor of this concept is the fact that HLA-B27 transgenic rats develop the different clinical manifestations observed in humans with spondyloarthritis [4].
The axial symptoms are the most frequent and predominant at an early stage of the disease. Spondyloarthritis is usually occurring in young adults and might have a dramatic impact on the quality of life of patients. However, the natural history of spondyloarthritis seems to be heterogeneous with several forms from mild to severe disease. The current unresolved questions in the field of spondyloarthritis can be summarized in the following sub-categories:
- •
diagnosis: sets of criteria [5], [6], [7] enabling the recognition of the disease at an early stage have been recently proposed [8] but require additional validation in a different setting;
- •
prognosis: the natural history of axial spondyloarthritis is not well known [9], [10], [11]. The recognition of prognostic markers will facilitate the therapeutical decision at an early stage of the disease in particular the indication of drugs such as the TNF blockers which are costly but dramatically efficient [12], [13]. Such markers could be either a specific phenotype observed at an early stage of the disease or a biological marker such as acute phase reactants, cytokines, DNA or RNA specific expressions;
- •
public health services: few data are available in France about quality of life and socio-economic consequences of spondyloarthritis [14], [15], [16].
These questions would be better addressed by obtaining periodic and prolonged follow-up over several years of patients presenting with early inflammatory back pain. To our knowledge, the first systematic prospective follow-up of patients with axial spondyloarthritis is the Outcome in Ankylosing Spondylitis International Study (OASIS) which included consecutive patients seen in three European departments of rheumatology with a mean disease duration of 12 years [16]. Another similar cohort (e.g. including patients at various duration stage of their disease) is also ongoing in Spain under the acronym of Regisponder [17]. In fact, only two recent cohorts are focused on patients seen at an early stage of the disease e.g. in Germany, the German Spondyloarthritis Inception Cohort (GESPIC) cohort [18] and in the Netherlands the Early Spondyloarthropathy Clinic (EsPac) [19]. More recently, the French Society of Rheumatology initiated a large national multicenter cohort, the so-called “DESIR cohort study” to facilitate investigations on diagnostic and prognostic markers but also aetiologic, pathogenic and socio-economic factors among patients with early inflammatory back pain suggestive of axial spondyloarthritis. DESIR is a French acronym for “devenir des spondyloarthropathies indifférenciées récentes”, “Outcome of recent undifferentiated spondyloarthritis”.
Section snippets
Study design
This is a longitudinal prospective cohort study in adults aged over 18 and less than 50 years from 25 regional centers in France. This study is fulfilling the current Good Clinical Practice Guidelines and has obtained the approval of the appropriate ethical committee. Participants at the study gave their written informed consent. A website containing the detailed description of the centers, the organization of the cohort but also the full detailed protocol and CRF is accessible at the following
Patients inclusion
A total of 708 patients with early inflammatory back pain were included between October 2007 and April 2010. All the centers were active and each regional center recruited between three and 73 patients (median 28).
Patients characteristics
The main characteristics of the patients are summarized in Table 1 and the activity and severity parameters of the disease are summarized in Table 2 with regard to the different available sets of criteria. It has to be noticed that among the 181 patients fulfilling the modified New
Discussion
This manuscript is summarizing the methodology and the baseline characteristics of the 708 patients with early inflammatory back pain.
The baseline characteristics of the patients and in particular the percentage of patients with MRI findings suggestive of inflammatory lesion of the sacroiliac joints (e.g. 33%) is very close to the anticipated one (between 30 to 50%).
Moreover, the relatively high percentage of patients fulfilling at entry the sets of criteria for spondyloarthritis confirms the
Disclosure of interest
The authors declare that they have no conflicts of interest concerning this article.
Acknowledgments
The DESIR cohort is conducted under the control of Assistance publique–Hôpitaux de Paris via the Clinical Research Unit Paris Centre and under the umbrella of the French Society of Rheumatology and Institut national de la santé et de la recherche médicale (Inserm). The database management is performed within the department of epidemiology and biostatistics (Professeur Jean-Pierre Daurès, D.I.M., Nîmes, France). An unrestricted grant from Pfizer Pharmaceuticals was allocated for the first 5 years
References (38)
- et al.
Why is the concept of spondyloarthropathies important?
Best Pract Res Clin Rheumatol
(2002) - et al.
Spontaneous inflammatory disease in tramsgenic rats expressing HLA-B27 and human beta2 m: an animal model of HLA-B27-associated human disorders
Cell
(1990) - et al.
Validation of a French language version of the MOS 36-Item Short Form Health Survey (SF-36) in young healthy adults
J Clin Epidemiol
(1995) - et al.
Associations between ankylosing spondylitis, psoriatic arthritis, Reiter's disease, the intestinal arthropathies, and Behçet's syndrome
Medicine (Baltimore)
(1994) - et al.
Spondyloarthritis: pathogenesis, clinical aspects and diagnosis. EULAR compendium on rheumatic diseases
JWJ Bijlsma Ed
(2009) - et al.
Evaluation of diagnostic criteria for ankylosing spondylitis. A proposal for modification of the New York criteria
Arthritis Rheum
(1984) - et al.
Criteria of the classification of spondylarthropathies
Rev Rhum Mal Osteoartic
(1990) - et al.
The European Spondylarthropathy Study Group preliminary criteria for the classification of spondylarthropathy
Arthritis Rheum
(1991) - et al.
The development of Assessment of SpondyloArthritis International Society classification criteria for axial spondyloarthritis (part II): validation and final selection
Ann Rheum Dis
(2009) - et al.
Predictive factors for the long-term outcome of spondyloarthropathies
J Rheumatol
(1994)
Comparison of patients evaluated for spondyloarthropathy in France and Morocco
Rev Rhum Ed Fr
Predictive factors of severity of spondyloarthropathy in North Africa
Br J Rheumatol
Anti-TNF-alpha therapy in ankylosing spondylitis
Expert Opin Pharmacother
ASAS/EULAR recommendations for the management of ankylosing spondylitis
Ann Rheum Dis
Socio-economic consequences of ankylosing spondylitis
Clin Exp Rheumatol
Functional disability predicts total costs in patients with ankylosing spondylitis
Arthritis Rheum
Work status and productivity costs due to ankylosing spondylitis: comparison of three European countries
Ann Rheum Dis
Disease pattern of spondyloarthropathies in Spain: description of the first national registry (REGISPONDER) extended report
Rheumatology (Oxford)
The early disease stage in axial spondyloarthritis: results from the German Spondyloarthritis Inception cohort
Arthritis Rheum
Cited by (204)
Clinical and imaging outcomes of different phenotypes of axial spondyloarthritis: 5-year analysis of the DESIR cohort
2024, Seminars in Arthritis and RheumatismSpA plus IBD or IBD plus SpA: Does commutative property apply?
2023, Autoimmunity ReviewsNational reimbursement databases: Use and limitations for rheumatologic studies
2022, Revue du Rhumatisme (Edition Francaise)National reimbursement databases: Use and limitations for rheumatologic studies
2022, Joint Bone SpineHow to fill the gap between clinical trials and daily practice in chronic inflammatory rheumatic diseases?
2022, Revue du Rhumatisme (Edition Francaise)