[Core set of behavioral recommendations for patients with ankylosing spondylitis]. / Kernsatz von Verhaltensempfehlungen für Patienten mit ankylosierender Spondylitis.

OBJECTIVES: Patients with ankylosing spondylitis (AS) can contribute to a favorable disease course by their own behaviour and environmental adaptations. However, no standardized consensus recommendations on patient behavior and adaptations exist, neither internationally nor nationally. The aim of this study was to establish a core set of recommendations concerning favorable patient behavior to be given to patients with AS by rheumatologists. METHODS: An extended literature research in the scientific and patient-oriented literature revealed 70 recommendations. These recommendations were evaluated and ranked by importance at a meeting of the Ankylosing Spondylitis International Federation (ASIF, 26 participants from 13 countries) in November 2011. The remaining 59 recommendations were extensively discussed, supplemented, partially reworded, condensed and those with the highest priority were selected by consensus at a seminar of local branch leaders of the AS patient organization in Germany (Deutsche Vereinigung Morbus Bechterew) in March 2012 (80 participants, 95% patients with AS). RESULTS: The core set encompasses 1) a general statement on living with AS and 2) recommendations in the areas of sitting position, walking, sleeping, at work, exercising, sports and recreational activities, diet and life style, sexuality and pregnancy, fall prevention, car driving and membership in an AS-specific patient organization. The selected recommendations received agreement by 80-100% of the patients. Some recommendations (e.g. fall prevention and car driving) are more relevant to patients with advanced and usually longstanding disease, i.e. with advanced ankylosis or osteoporosis. CONCLUSIONS: For the first time a core set of recommendations for the behavior of patients with AS was created in collaboration with many persons affected by the disease. Patients with AS should receive these recommendations from their rheumatologists, ideally early in the disease course. The German version of this core set is presented in this article.

[Advice for patients diagnosed with ankylosing spondylitis: results of a representative patient survey in Germany]. / Hinweise für Patienten mit der Diagnose Ankylosierende Spondylitis: Ergebnisse einer Repräsentativbefragung der Deutschen Vereinigung Morbus Bechterew e.V.

BACKGROUND: Following the diagnosis of a chronic disease like ankylosing spondylitis (AS), patients need extensive information on what to expect, how to behave and what they need to be aware of in particular in order to contribute to a favourable disease outcome. METHODS: A questionnaire consisting of 82 questions regarding demographics, diagnosis, information received with the diagnosis, disease activity, function, quality of life, treatment, ability to work, smoking etc. was distributed to AS patients by rheumatologists in 51 hospitals and/or private practices. In addition, the questionnaire was sent to 3400 randomly selected members out of the 14,000 patient members of the German Ankylosing Spondylitis Society (Deutsche Vereinigung Morbus Bechterew, DVMB). RESULTS: In all, 1068 DVMB members and 205 non-members responded to the survey. Almost all of these indicated that they had received at least one piece of information regarding what they should be particularly aware of, at the time of diagnosis. A total of 69% were informed about the need for daily exercise, 51% about the value of individual physiotherapy, 38% about the value of group physiotherapy, 37% about the need to maintain an upright posture, and 33% were recommended 3 weeks in a rehabilitation centre. Less than 30% were informed about appropriate sports, appropriate working conditions, suitable chairs, mattress, pillows etc., about the value of radon therapy or about joining a disease-specific patient organisation. To the question regarding what patients meanwhile consider as most important, daily exercise (50%) and sufficient movement at work and leisure (55%) were reported most frequently. Other aspects regarded as important to patients included a flat, firm mattress (53%), avoiding large pillows (42%), keeping an upright posture at work (38%), appropriate sports (36%), and an upright posture also when not at work (34%). Of the DVMB members, 46% had participated in disease-specific standardised patient education, compared with only 31% of non-members (p<0.001).

[German patient version of the ASAS/EULAR recommendations for the management of ankylosing spondylitis]. / Deutsche Patientenversion der Empfehlungen für das Management des Morbus Bechterew gemäss ASAS/EULAR.

The evidence-based recommendations on the management of ankylosing spondylitis (AS) have enjoyed a high level of acceptance and circulation in Germany, as well as in other European countries. To make patient participation in the decision-making process regarding their disease easier, as well as to strengthen the physician-patient relationship, the ASAS and EULAR have set up an initiative to formulate a patient-friendly version of the recommendations, initially in English. In order that this lay version can also be used in German-speaking countries, a group predominantly comprising patients was formed to ensure that the German translation of this version has the broadest possible basis. In cooperation with the German (DVMB), Austrian (OVMB) and Swiss Morbus Bechterew Associations (SVMB), as well as the German Rheumatology League, patients from Germany, Austria and Switzerland with appropriate English skills were invited to a meeting in 2008. The aim of the translation was to leave the content unchanged while finding a level of speech easily understandable to the lay person. The translated text was considered as accepted when a minimum of 12 patients (>80%) gave their approval on the wording of the translation of individual recommendations in an open vote. The rheumatologist given the function of moderator was not entitled to vote. The level of approval for each recommendation was determined (0: no approval to 10: full approval). The 14 patients were able to translate the English patient version into German. Choice of words and style of speech were discussed intensively. Acceptance of the translation of the 10 recommendations was generally high. The content was clearly accepted with an approval rate of 8.4+/-1.6. This was the first time that patients, in cooperation with rheumatologists, have translated an international patient version on AS management into German under controlled conditions. The translation text was approved by the majority in terms of both form and content. Acceptance and circulation of the German patient version should be evaluated in the near future.

ASAS/EULAR recommendations for the management of ankylosing spondylitis: the patient version.

BACKGROUND: The ASAS/EULAR (Assessment of SpondyloArthritis International Society/European League Against Rheumatism) recommendations for the management of ankylosing spondylitis (AS) have been developed by rheumatologists for a target population of health professionals. OBJECTIVE: To extend the cooperation between ASAS and EULAR by translating the recommendations into a language that can be easily understood by patients in order to further disseminate and evaluate the recommendations. METHODS: In cooperation with patient organisations 18 patients with AS (17 European, one Canadian) were invited to attend a meeting in February 2008. As a starting point the original publication and a version created by Canadian patients with AS were used. To improve the understanding of potential problems, data on the evaluation of a recent German translation were presented. After intensive discussions the wording was adjusted and a vote was held on the new wording of the recommendations aiming for >80% agreement on each sentence. Finally, patients were asked to indicate their level of agreement with the content of the recommendations. RESULTS: Ten recommendations were successfully translated into a patient-understandable version. The original text was changed in most cases. In all but one case (recommendation No 4) there was broad agreement with the proposed translation. The overall agreement with the content of the recommendations was high: 8.7 (0.6). CONCLUSION: For the first time, EULAR recommendations were successfully converted into a patient-understandable language version by a large international group of patients in collaboration with rheumatologists. The evaluation showed broad agreement. Translations into different languages and further dissemination in individual countries will be performed.

[Patient evaluation of the German version of the ASAS/EULAR recommendations for the management of ankylosing spondylitis]. / Evaluation der deutschen Version der ASAS/EULAR-Empfehlungen für das Management der ankylosierenden Spondylitis durch Patienten.

On the initiative of the ASAS (Assessment of SpondyloArthritis International Society) and EULAR (European League against Rheumatism), evidence-based recommendations for the management of ankylosing spondylitis (AS) were drawn up, with healthcare professionals as the target group for these recommendations. To facilitate patient participation in the decision-making process with regard to their disease, and to further improve the doctor-patient relationship, the ASAS and EULAR are working on a patient-friendly version of the recommendations.In order to establish to what extent the ASAS/EULAR recommendations, as translated by German experts, can be understood by patients, the recommendations for health care professionals, together with an evaluation form, was distributed to 105 delegates of the German society for ankylosing spondylitis (Deutschen Vereinigung Morbus Bechterew, DVMB). Responders were questioned on text comprehension and their level of agreement (0: not agree at all to 10: fully agree). Space was also provided for additional comments.In total, 59 delegates filled out the questionnaire (rate of return: 56.2%). For recommendation Nos. 1, 2, 5, 6 and 7, text comprehension was moderate. On average, the recommendations were positively assessed with 8.38+/-1.9. Recommendation No. 4 (non-pharmacological therapy) was given the highest agreement (9.54+/-1.02), while recommendation No. 7 (corticosteroids, 6.54+/-2.55) received the lowest agreement. The acceptance of the recommendation was high with 87.9% questions answered.For the first time, the German expert translation of recommendations for the management of AS patients was evaluated by patients. The present translation met with broad approval. To minimize text comprehension problems, patients should be involved in compiling a future patient version.

Proposal of a linear definition of the Bath Ankylosing Spondylitis Metrology Index (BASMI) and comparison with the 2-step and 10-step definitions.

BACKGROUND: The Bath Ankylosing Spondylitis Metrology Index (BASMI) characterises the spinal mobility of patients with ankylosing spondylitis. Two versions have been published using categorical scores with either scores 0-2 for each of the five assessments, or scores 0-10. For metric purposes, we recently defined a BASMI version with linear score definitions. AIM: to evaluate agreement between three BASMI definitions and to test sensitivity to change. PATIENTS AND METHODS: The performance of the BASMI(2) (based on the 2-step definition), BASMI(10) (based on the 10-step definition), and BASMI(lin) (based on the linear definition), are compared in 598 status assessments and 222 follow-up assessments with a 24-week interval after an intervention with either placebo or a tumour necrosis factor (TNF) blocker from various cohorts of patients with ankylosing spondylitis (AS). Descriptive statistics and Bland-Altman plots were applied to compare the pairwise agreement of the three definitions. To assess sensitivity to change, Guyatt effect size using change data from the placebo and actively treated patients were used. RESULTS: Bland-Altman analysis showed that the differences between BASMI(2) scores and scores obtained by either of the two other definitions were highly dependent on the magnitude of the measurement. Guyatt effect sizes were 0.66 for the BASMI(2), 0.95 for the BASMI(10), and 1.04 for the BASMI(lin), respectively, demonstrating best sensitivity to change for the newly-developed BASMI(lin). CONCLUSIONS: The BASMI(10) and BASMI(lin) have clear metric advantages as compared to BASMI(2), among which are their superior sensitivity to change and feasibility of BASMI(lin) in computer evaluations. The BASMI(10) and BASMI(2) are not interchangeable.

Scientific contributions of ankylosing spondylitis patient advocacy groups.

The Spondylitis Association of America has been the driving force behind a major research initiative in the US, having leveraged a substantial amount of money into a $4.5 million grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The grant last year established the North American Spondylitis Consortium to expedite the search for genes that determine susceptibility to ankylosing spondylitis. The German Ankylosing Spondylitis Society, which has more than 14,000 patient members, initiated in 1996 a professional survey of ankylosing spondylitis patients, with financial support from the German Federal Health Ministry. The results of this survey have recently been published, but only in the German language; a part of it is summarized here in English. Following are some of the important findings. The average age at disease onset does not differ significantly between men and women, but there is a significantly longer delay in disease diagnosis among female patients. The average delay in disease diagnosis is getting shorter; there was an average delay of 15 years for patients with disease onset in the 1950s, and it decreased to 7.5 years for patients with disease onset between 1975 and 1979. There was a relatively greater degree of underdiagnosis of the disease among female than male patients in the past; whereas only 10% of the patients in whom the disease was diagnosed in about 1960 were women, this percentage has progressively increased in the subsequent decades to reach 46% among those in whom the disease was diagnosed since 1990. The speed at which spinal ankylosis progresses is slower in female patients, but women are in a significantly worse situation than men in terms of pain and the need for drug therapy, even though the women in the German Ankylosing Spondylitis Society sample are, on average, younger than the men and have a shorter average disease duration. It is possible that the slower and relatively incomplete progression to spinal ankylosis in female patients impedes the occurrence of a decrease in pain with time, compared with that observed in male patients.

[Age at disease onset and delayed diagnosis of spondyloarthropathies]. / Erkrankungsalter und Diagnoseverzögerung bei Spondylarthropathien.

A questionnaire with 78 questions concerning the situation of ankylosing spondylitis (AS) sufferers in Germany was distributed to a representative 3000 out of the more than 14,000 patient members of the German AS society; 1614 patients (54%) responded. The age distribution of these patients roughly agrees with that expected due to the distribution of the age at diagnosis and the age distribution of the German population. The group of patients more than 65 years old is, however, under-represented. It turned out that at least 28% of the patients responding do not suffer from idiopathic AS but from other spondyloarthritides (spondylitic psoriasis, spondyloarthritis combined with Crohn's disease or ulcerative colitis). The distribution of the age at disease onset agrees well with that published in 1984 by van der Linden et al.: For 4% of the patients, the age at appearance of the first spondylitic symptoms was less than 15 years, for 90% it was 15-40 years and for the remaining 6% more than 40 years. The average age at disease onset was 25.6 years. The spondyloarthritides do not differ significantly in the distribution of the age at the first spondylitic symptoms. The distribution of the age at diagnosis did not differ significantly between male and female patients, in contrast to the findings by van der Linden et al. in 1984. The average age at diagnosis was 34.3 and 35.3 years for male and female patients, respectively. The resulting mean diagnosis delay for male and female patients was 8.4 and 9.8 years, respectively. Whereas the average diagnosis delay was still 15 years for patients with disease onset in the 1950s, it was only 71/2 years for patients with disease onset in 1975-79. It is not yet possible to predict if an average diagnosis delay less than 71/2 years results for patients with a disease onset later than 1980, because the number of further diagnoses to be expected for patients with disease onset in these years is not negligible. Twenty-six percent of the patients (22% of the males, 34% of the females) have relatives, likewise, suffering from AS. Whereas patients with familiar AS experience their first spondylitic symptoms, in the average, 11/2 years earlier than patients without relatives suffering from AS, the difference is 5 years for patients suffering from spondyloarthritis combined with ulcerative colitis. Reports written for patients on other results of the survey can be found in the newsletter "Bechterew-Brief" of the Deutsche Vereinigung Morbus Bechterew.