ArticleZeitschrift fur Rheumatologie2011
[Advice for patients diagnosed with ankylosing spondylitis: results of a representative patient survey in Germany].
Article in Zeitschrift fur Rheumatologie, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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Who cites it
2 citing papers in PubMed, 6 citations in OpenAlex.
- [Core set of behavioral recommendations for patients with ankylosing spondylitis].Zeitschrift fur Rheumatologie · 2013Review
- Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations.Rheumatology international · 2013Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFollowing 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.
methodsA 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).
resultsIn 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).
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.