Description of the registry of patients with ankylosing spondylitis in Turkey: TRASD-IP

Abstract

A web-based application patient follow-up program was developed to create a registry of patients with ankylosing spondylitis (AS) by the Turkiye Romatizma Arastirma Savas Dernegi (TRASD) AS Study Group. This study describes the methodological background and patient characteristics. The patient follow-up program is a web-based questionnaire, which contains sections on socio-demographic data, anamnesis, personal and family history, systemic and musculoskeletal examination, laboratory and imaging data and treatment. Between October 1, 2007 and February 28, 2009, 1,381 patients from 41 centers were included in the registry (1,038 males [75.2%]; mean age 39.5 ± 10.7 years). Mean disease duration was 12.1 ± 8.5 years, and mean time from initial symptom to diagnosis was 5 ± 6.8 years (median 2 years). HLA-B27 positivity was detected in 73.7% of 262 patients tested. Manifestations of extraarticular involvement were anterior uveitis (13.2%), psoriasis and other skin and mucous membrane lesions (6%) and inflammatory bowel disease (3.8%). The prevalence of peripheral arthritis was 11.2%. In 51.7% of patients, the Bath AS Disease Activity Index was ≥4. But since our patients consisted of the ones with more severe disease who referred to the tertiary centers and needed a regular follow-up, they may not represent the general AS population. Disease-modifying anti-rheumatic drugs were being used by 41.9% of patients, with 16.4% using anti-TNF agents. TRASD-IP (Izlem Programi: Follow-up program) is the first AS registry in Turkey. Such databases are very useful and provide a basis for data collection from large numbers of subjects. TRASD-IP gives information on the clinical and demographic profiles of patients, and the efficacy and safety of anti-TNF drugs, examines the impact on quality of life, and provides real-life data that may be used in cost-effectiveness analyses.

Understanding How the Diagnostic Delay of Spondyloarthritis Differs Between Women and Men: A Systematic Review and Metaanalysis

“…Although 9 papers mention the concepts of social events 21,47 , social support 21,42 , social system 21 , social situation 27,30 , effect and consequences 11,21 , social status 15,21,23,28 , social domain and function 31 , and quality of life 21,31 , they are not in relation to social/sex-related causes explaining sex differences in delay in diagnosis. Only Aggarwal in 2009 adequately discussed the complex range of sex factors involved in the diagnostic process of SpA according to sex 8 .…”

“…Delay in diagnosis of SpA has been described in women 5,9,10 and in both sexes 6,7,[11][12][13][14][15][16]20,26,27,29,30,32,33,35,38,39,40,44,45,46 , and although Bandinelli 23 observed less diagnostic delay in women than in men, in most of the papers where delay was compared between men and women, it was greater in women 8,17,18,19,21,22,28,31,34,37,41,42,43,47,48 . This implies that patients have had medically unsolved disorders for a long time, have continued searching for a diagnosis and treatment, or are being erroneously diagnosed and managed 49 .…”

“…Table 1 shows the main characteristics of the 42 studies on diagnostic delay in SpA included in this systematic review 1,2,3,[8][9][10][11][12][13][14][15][16][17][18]19,20,21,22,23,[26][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47]48 . The review included 23,883 patients (67.6% men, 32.3% women).…”

“…Each of these was individually combined with: (delay OR delayed) AND (sex OR gender OR women OR woman) NOT (psoriatic arthritis). Complemen tary papers potentially eligible were included, a search through snowballing was performed by cross reference, and 16 studies were identified 1,3,[8][9][10][11][12][13][14][15][16][17][18][19][20][21] . Ultimately, 379 identified papers were consulted.…”

The Distribution of HLA B27 in Patients with Ankylosing Spondylitis in Eastern Anatolia

“…5 In our country, this ratio was found as 6.8-8% in healthy individuals and 73.7-80% in AS patients. 4,6,7 AS prevalence is 2% in HLA B27 positive individuals and 20% in HLA B27 positive relatives of AS patients. HLA B27 was seen to be negative in 5-10% of AS patients.…”