Ankylosing spondylitis self-help organisations - do members differ from non-members?

OBJECTIVES: Joining a patient self-help organisation is recommended for patients with ankylosing spondylitis (AS). The objective was to compare AS patients who are members of a self-help organisation with non-members regarding disease specific and patient personality aspects, and make inferences on potential benefits of membership. METHODS: A comprehensive questionnaire regarding demographics, smoking habits, acquisition of information about the disease, disease activity, functioning, patient satisfaction, treatment, sick leave, work disability and educational level was distributed to members of the German AS self-help organisation and to non-member AS patients. RESULTS: In total, 1273 patients responded. Significant differences regarding age and disease duration led us to match members 2:1 to non-members. In the matched population (n=549), members had a higher level of education, felt more often well-informed about the disease, had less often physically demanding jobs, and smoked less than non-members. Members were more often treated with NSAIDs and less often with TNF-blockers suggesting more severe disease in non-members. While the level of disease activity was similar (BASDAI 4.1 vs. 4.2), members had a better functional status (BASFI 3.5 vs. 3.9) and significantly less days on sick leave during the last year (15.1 days vs. 31.2 days). Days on sick leave increased with increasing BASFI significantly more strikingly in non-members than in members. CONCLUSION: AS patients who are members of an AS self-help organisation have a higher educational level and are much better informed about the disease. Inferences on disease outcome measures, however, are hampered by potential confounders.

Easy probability estimation of the diagnosis of early axial spondyloarthritis by summing up scores.

OBJECTIVES: Several sets of criteria for the diagnosis of axial SpA (including non-radiographic axial spondyloarthritis) have been proposed in the literature in which scores were attributed to relevant findings and the diagnosis requests a minimal sum of these scores. To quantitatively estimate the probability of axial SpA, multiplying the likelihood ratios of all relevant findings was proposed by Rudwaleit et al. in 2004. The objective of our proposal is to combine the advantages of both, i.e. to estimate the probability by summing up scores instead of multiplying likelihood ratios. METHODS: An easy way to estimate the probability of axial spondyloarthritis is to use the logarithms of the likelihood ratios as scores attributed to relevant findings and to use the sum of these scores for the probability estimation. RESULTS: A list of whole-numbered scores for relevant findings is presented, and also threshold sum values necessary for a definite and for a probable diagnosis of axial SpA as well as a threshold below which the diagnosis of axial spondyloarthritis can be excluded. In a diagram, the probability of axial spondyloarthritis is given for sum values between these thresholds. CONCLUSION: By the method proposed, the advantages of both, the easy summing up of scores and the quantitative calculation of the diagnosis probability, are combined. Our method also makes it easier to estimate which additional tests are necessary to come to a definite diagnosis.

Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations.

Advice concerning behaviour and adaptations of living and working environment is considered an unmet need by patients with ankylosing spondylitis (AS). The aim of this study was to develop a core set of recommendations to be given to patients by their rheumatologists. A systematic literature research of scientific and patient-oriented literature revealed 70 raw recommendations. These recommendations were evaluated and ranked at a meeting of the Ankylosing Spondylitis International Federation (ASIF, 26 participants including 19 patients with AS, 5 rheumatologists and 2 physiotherapists from 13 countries) in November 2011. Thereafter, the 59 remaining recommendations were extensively discussed, supplemented, reworded, condensed and voted on during a meeting of local branch leaders of the AS patient organisation in Germany (Deutsche Vereinigung Morbus Bechterew, DVMB) with 80 participants (95 % of whom with AS), 2 rheumatologists and 1 occupational therapist in March 2012. The core set of final recommendations comprises (1) a general statement regarding living with AS which was considered highly important by patients and (2) the following domains: sitting position, walking, sleeping, at work, exercises, sports and recreational activities, diet and lifestyle, sexuality and pregnancy, fall prevention, car driving and advantages of membership in an AS-specific patient organisation. Most recommendations are relevant already in early disease, others concern advanced AS (e.g. fall prevention and car driving). The selected recommendations received high agreements (80-100 %). A first core set of recommendations for the behaviour and environmental adaptations of patients with AS was established under participation of many patients.

Definition of disease duration in ankylosing spondylitis.

Two definitions of the "disease duration" of ankylosing spondylitis (AS) have been used in the literature: (1) duration since first symptoms connected with AS and (2) duration since diagnosis of AS. To investigate how useful these definitions are for research, we reinvestigated the data of four surveys completed by patients with AS in the years since 1996. We found that the majority of the patients remembered the age at first symptoms with an accuracy of

Infection and work stress are potential triggers of ankylosing spondylitis.

The objective of the study was to investigate potential triggering events for the onset of ankylosing spondylitis (AS). A large retrospective population survey of 1,080 AS patients was carried out by multi-faceted questionnaire. A nested case-control study compared the cohort to 102 patients with lumbar disc prolapse. Participants with AS had a mean age of 49.8 years, mean age of disease onset was 25.2 years and 63% of the cohort were male. Seventy-nine per cent knew they were human leucocyte antigen (HLA)-B27-positive, and a further 12.5% were unaware of their HLA-B27 status. Infections were relatively common in the 3 months leading to the first symptoms, 4.6% reporting gastrointestinal infection, 2.5% reporting urinary tract infection and 2.6% respiratory infection. Five per cent reported heavy physical activity in the 3 months prior to the onset of symptoms, 4.2% emotional stressors and 3.1% work stressors. Injury and surgery were less commonly reported (1.7 and 0.7%, respectively). Pregnancy was reported by 7.4% of the female participants. When the 12 months leading up to the first symptoms was compared to the 12 months previous to that, work stressors (OR 1.5), and pregnancy (OR 2.5) infection (OR 1.5 to 1.8) were significantly more common closer to disease onset. Infection and work stressors are potential triggers for the onset of AS; however, low rates suggest they are only a small part of the environmental milieu that combines with a genetic predisposition to cause the development of this chronic inflammatory disease.

Nonsteroidal anti-inflammatory drug use in ankylosing spondylitis--a population-based survey.

The objective of the study is to describe the use, clinical efficacy, and toxicity of nonsteroidal anti-inflammatory drug (NSAID) therapy in patients with ankylosing spondylitis (AS). A cross-sectional population study of 1,080 AS patients was carried out by a written questionnaire in the year 2000. Seventy-eight percent of AS patients had regularly taken NSAIDs for their disease 12 months prior to the study. Most AS patients commonly used diclofenac, naproxen and indomethacin. AS patients were generally rather satisfied with the efficacy of their therapy where 19.1% reported complete pain control, 26.8% reported pain reduction to one quarter, and a further 34.4% reported pain reduction to one half. However, over 20% of patients taking NSAIDs still reported insufficient pain control and more than 40% changed the NSAID due to lack of efficacy. One quarter of AS patients reported severe side effects from their treatment, most commonly abdominal pain, headache and dizziness, and nausea. There was no effect on age or duration of disease on the occurrence of NSAID-related side effects. Medications were commonly ceased or changed due to inefficacy or side effects. The percentage of AS patients reporting changing their NSAID due to side effects ranged from 10.5% for celecoxib to 31.4% for indomethacin. We conclude that NSAIDs are effective in the management of inflammatory symptoms of many, but not all, patients with AS. There is a significant side effect profile, which frequently results in medication change or cessation. Anti-tumor necrosis factor therapy may reduce the need for intensive long-term NSAID therapy in AS.

The high prevalence of infections and allergic symptoms in patients with ankylosing spondylitis is associated with clinical symptoms.

Ankylosing spondylitis (AS) is strongly associated with the major histocompatibility complex (MHC) class I antigen HLA-B27. This may have influence on the physiologic immune response. Whether it leads to an increased prevalence of infections and/or allergy in AS patients is unclear. This study aims to determine the prevalence of infections and allergic symptoms in patients with AS and to detect a possible association with clinical symptoms. Data on 1,080 AS patients and on 102 disc prolapse patients were collected by questionnaire. The proportion of patients with a symptomatic infection in the last year was 65.5% in AS patients in comparison with 25.5% in disc prolapse patients (p=0.0001). AS patients reported more gastrointestinal (GI) [odds ratio (OR) 5.07, 95% confidence interval (CI) 2.20-11.71], urinary tract (OR 2.81, 95%CI 1.41-5.72), and respiratory (OR 5.83, 95%CI 3.38-10.08) infections than did disc prolapse patients. Multiple infections were more common in AS patients across all infection types. Allergic symptoms were reported by AS patients more frequently than by disc prolapse patients (OR 5.13, 95%CI 3.49-8.80). Patients reporting concurrent inflammatory bowel disease were more likely to report GI (OR 3.0, 95%CI 1.9-4.8) and urinary tract (OR 1.7, 95%CI 1-2.8) infection than primary AS patients. In AS patients, infection was independently associated with female gender (OR 1.96, 95%CI 1.47-2.56), a history of significant peripheral joint inflammation (OR 1.55, 95%CI 1.18-2.05), and increasing pain duration (p=0.05). A high prevalence of common infections and allergic symptoms is seen in patients with AS, most of which are HLA-B27-positive. This may have implications both for underlying mechanisms of disease and for therapeutic options.

Prevalence and annual incidence of vertebral fractures in patients with ankylosing spondylitis.

OBJECTIVES: To evaluate the prevalence and annual incidence of clinically-manifest vertebral fractures among patients with ankylosing spondylitis (AS). METHOD: Coordinated by the Ankylosing Spondylitis International Federation, a self-administered general questionnaire which included some questions on gender, age, age at onset of disease, and a history of vertebral fracture was inserted in one issue of the membership journals of the AS patient organizations in Germany and Austria. RESULTS: Among the 1,071 patients responding who all had indicated that the diagnosis of AS had been established or confirmed by a physician, 61 (5.7%) indicated a history of vertebral fracture, 15 of them (1.4%) without an accident. The prevalence of vertebral fractures was 6.2% among male AS patients and 4.6% among females (NS), and 4.8% among HLA-B27+ patients and 9.9% among HLA-B27(-) patients (p<0.05). Spinal fractures occurred more often among AS patients with peripheral arthritis (7.1%) than among patients with axial involvement only (3.1%, p<0.01). The average delay between disease onset and diagnosis of AS was 10.5 years for patients with a vertebral fracture, compared to 8.7 years for patients without any such event (p<0.05). Among patients with a disease duration >or=42 years, the prevalence of vertebral fractures was 14%. The annual incidence of vertebral fractures which occurred without an accident had a maximum of 0.1% per annum at a disease duration of 20-35 years, whereas the incidence of vertebral fractures caused by an accident increased continuously with increasing disease duration, amounting to 1.3% per annum after a disease duration of 45 years. CONCLUSION: A considerable proportion of AS patients will experience a vertebral fracture during the course of the disease, in particular if peripheral joints are also involved.

Clinical vertebral fractures in patients with ankylosing spondylitis.

OBJECTIVE: To evaluate the prevalence and characteristics of clinically confirmed vertebral fractures (CVF) in patients with ankylosing spondylitis (AS). METHODS: Coordinated by the Ankylosing Spondylitis International Federation in Germany and in Denmark, a self-administered questionnaire was sent to all their members about age, diagnosis, disease duration, HLA-B27 status, and history of CVF. Patients who were aware of having had a CVF were asked to return the questionnaire with additional specification of the location of CVF, associated trauma, neurological complications, therapy for these complications, and recovery. We also reviewed available radiographs. RESULTS: Out of 15,097 questionnaires, 59 patients (0.4%) reporting 66 CVF returned the complete questionnaire (46 men, 13 women). Mean age at fracture was 50 +/- 9 years, after a mean duration of symptoms of 26 +/- 11 years. CVF with wedging or crush or transverse fracture were reported in the cervical (n = 21, 36%), thoracic (n = 21, 36%), and lumbar spine (n = 16, 27%), with one unspecified. In 37 fractures (56%), patients reported no/low or medium trauma in relation to the fracture. In 31 fractures (47%), patients reported neurological complications, occurring mostly without trauma (n = 11, 35%) or after minimal trauma (n = 7, 23%). Twenty (65%) of these patients did not have full neurological recovery. CONCLUSION: We found that 0.4% of patients with AS reported CVF at a mean age of 50 years, occurring after 2 decades of disease, mainly without trauma or after minimal trauma, with frequent neurological complications mostly followed by incomplete neurological recovery.

Age at disease onset and diagnosis delay in HLA-B27 negative vs. positive patients with ankylosing spondylitis.

OBJECTIVE: To investigate differences between HLA-B27(-) and HLA-B27(+) patients with ankylosing spondylitis (AS). METHODS: A total of 1080 patients with AS responded to a questionnaire containing 30 questions; 945 (87.5%) knew their HLA-B27 status, 10% of them being B27(-). RESULTS: The average age at disease onset was 27.7 years in B27(-) and 24.8 years in B27(+) AS (P < 0.01). The average age at diagnosis was 39.1 and 33.2 years and the average diagnosis delay 11.4 and 8.5 years, respectively. The distribution in age at disease onset was significantly wider in B27(-) (standard deviation 10.0 years) than in B27(+) AS (8.3 years). The percentages with childhood (age < 16 years) disease onset did not differ significantly (7.6% vs. 6.2%, respectively), whereas the percentage of late onset (age > 40 years) was significantly greater among B27(-) (13%) than among B27(+) (5%) patients with AS. There is a difference in average age at disease onset between male (25.7 years) and female (24.2 years) AS patients, and no difference between patients with primary AS and AS associated with psoriasis, inflammatory bowel disease, or reactive arthritis. Acute anterior uveitis was significantly less frequent in B27(-) (26%) than in B27(+) (41%) patients with AS. CONCLUSIONS. This study of a much larger number of B27(-) AS patients than have been studied previously confirms earlier reports indicating a significantly older average age at disease onset and a less frequent prevalence of acute anterior uveitis in B27(-) than in B27(+) AS. The frequency of late disease onset (after 40 years of age) is significantly higher in B27(-) AS. We provide the first report on significant differences in the distribution curves for the age at disease onset and for the age at diagnosis between B27(-)and B27(+) patients with AS. The average delay between the first spondyloarthritic symptoms and the diagnosis is significantly longer in B27(-) than in B27(+) AS. The frequency of juvenile disease onset (before age 16 years) is nearly the same, irrespective of the B27 status.

Ankylosing spondylitis in the pharaohs of ancient Egypt.

BACKGROUND: Among the pharaohs of the 18th and 19th dynasty of Old Egypt, at least three had ankylosing spondylitis: Amenhotep (Amenophis) II, Ramses II ("The Great"), and his son Merenptah. OBJECTIVE: An illustrated review is given on the radiological indications for their disease, together with the rough history of these pharaohs, the history of their tombs, of the detection of their mummies in the 19th century and of their paleopathological investigation.

Do patient self-help organizations help?

Ankylosing spondylitis (AS) patient organizations presently exist in 24 countries. This chapter describes how these patient organizations help AS patients to cope with their disease and describes how patients and health professionals assess these contributions.