Organizational Meeting for the AS-US Working Group Advancing Clinical Research in AS and SpA in the USA Spondylitis Association of America 20 Years of Setting the Course

Muhammad Asim Khan, MD, MACP, FRCP Professor of Medicine Case Western Reserve University Cleveland, Ohio, USA Concluding Remarks

Juvenile SpA Reactive arthritis The Spondyloarthropathies Arthritis associated with Ulcerative colitis Ulcerative colitis Crohn’s dis PsoriaticArthritis AnkylosingSpondylitis Undiff SpA

Estimates of Prevalence of SpA in the US 1998 Report* *Lawrence RC, et al. Arthritis Rheum 1998; 41: Conservative Estimates of Prevalence of SpA (AS, ReA, PsA, Enteropathic Arthritis) 2.1 cases per 1,000 population among adults (individuals over 15 yrs of age): { 0.21% } (1990 population) Based on studies using the disease specific criteria

Prevalence of PsA No population-based US study

1 Gran JT, Husby G, Hordvik M. Ann Rheum Dis 1985; 44: Riise et al. J Rheumatol 2000; 27: An Epidemiological Survey of AS in Tromso, Norway [HLA-B27 Prevalence 16%]  AS Prevalence = 1.1% to 1.4%. 1  4 to 6 times more common in males (males: % and females: %)  6.7% of the B27(+) & 0.2% of B27(-) individuals had AS  22.5% of the B27(+) subjects with chronic back pain or stiffness had AS  In contrast: Total prevalence of RA in Troms county (in individuals aged >20) = 0.39% %. 2

Spondyloarthropathies ESSG Criteria Dougados M, et al. Arthritis Rheum Oct;34(10):

Spondyloarthropathies Amor Criteria 1990 Amor B, et al. Rev Rheum Mal Osteoartic. 1990;57:

Prevalence of AS & Related SpA (%) Adapted with permission from Khan MA. Ann Intern Med. 2002;136:

Juvenile SpA Reactive arthritis Reiter syndrome Sacroillitis: Most Common Among The Spondyloarthropathies Arthritis associated with Ulcerative colitis Ulcerative colitis Crohn’s dis PsoriaticArthritis AnkylosingSpondylitis Undiff SpA EntheitisSacroiliitisSynovitis

ENTHESITIS

Compact fiber bundles region Fibrocartilage, non- mineralized Mineralized fibrocartilage Lamellar bone ENTHESIS Braun, Khan, Sieper. ARD 2000; 59:

c) MRI subtraction evaluation Enhancement of SI joints (synovial part & juxta-articular bone (‘bone edema’) (Courtesy of M. Rudwaleit and J. Sieper.) Khan MA: In: Hochberg et al. RHEUMATOLOGY, (3rd Ed.) 2003, (in press). a) MRI of the SI joints b) 5 minutes after gadolinium inj.

Khan MA: In: Hochberg et al. RHEUMATOLOGY, (3rd Ed.) 2003, (in press).

AS/Axial SpA 95% probability 5% 14 % 30-70% Inflammatory Back Pain Any one of the additional clinical features: e.g. enthesitis, positive family history, uveitis, asymmetric arthritis, positive response to NSAIDs, etc. Imaging = X-rays If negative, then CT or MRI (or HLA-B27) Khan MA. Ankylosing spondylitis: Clinical features. In: Hochberg et al (Eds). RHEUMATOLOGY, (3rd Edition). London, Mosby How to make an early diagnosis? Chronic Back Pain Probability of AS/Axial SpA in Patients With Back Pain Courtesy Rudwaleit & Sieper Underwood & Dawson Brit J Rheumatol 1995.

HLA B27 Distribution HLA B2709 HLA B Khan MA. Current Opin Rheumatol 1995;7:

Maetzel et al. Rheumatology 2000; 39:975. Noncompliance: The Other “Drug Problem” Rates of non-compliance with arthritis therapy ranges from 22% to 75%

Khan MA. Ankylosing Spondylitis: The facts. 2002, Oxford Univ Press. Educating the Patients and their Families  Patient education enhances therapeutic compliance  An active participation by the patient is needed in treatment strategies  These strategies will fail if patient is not committed  Comprehensive management strategies include not only medical but also emotional and social support

Khan MA. Ankylosing Spondylitis: The facts. 2002, Oxford University Press The Word Doctor implies Education more than Healing  Importance of appropriate posture and regular exercises  What kind of a bed to sleep on, and proper sleeping posture  What kind of chair to sit on, and ideal sitting posture  Advice about car driving, proper shoes, recerational sports, working postures, and working environment

Khan MA. Ankylosing Spondylitis: The facts. 2002, Oxford Univ. Press. The Word Doctor implies Education more than Healing, Cont’d.  Counselling about family & professional life  Risk of physical trauma and spinal fracture  Importance of long term drug therapy  Special instructions for taking the prescribed drugs & any potential untoward effects

Khan MA. Ankylosing Spondylitis: The facts. 2002, Oxford Univ Press. AS: Patient Education  Physicians need to know how their patients are getting their health care information  It is easy for unscrupulous individuals and organizations to disseminate via the internet unaccountable or deceptive information, often anonymously into the hands of unsuspecting patients  Patient education should include a discussion about these aspects as well

AS: A Multidisciplinary Approach is Warranted  Need to work closely with patients and patient self-help organizations  to convince the health care authorities, insurance companies & other relevant organizations or institutions, the favorable long-term cost/benefit ratio of the newest is very effective although very costly therapies