Feldtkeller E, Hammel L, Brenneis C, Song I-H, Rudwaleit M
Deutsche Vereinigung Morbus Bechterew, Schweinfurt.
Z Rheumatol. 2011 Jul;70(5):431-7. doi: 10.1007/s00393-011-0761-2.
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.
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).
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).
在诊断出强直性脊柱炎（AS）等慢性病后，患者需要获得大量信息，包括预期情况、行为方式以及特别需要注意的事项，以便实现良好的疾病转归。
一份包含82个问题的问卷，涉及人口统计学、诊断、确诊时所获信息、疾病活动度、功能、生活质量、治疗、工作能力、吸烟等方面，由51家医院和/或私人诊所的风湿病专家分发给AS患者。此外，该问卷还被发送给德国强直性脊柱炎协会（Deutsche Vereinigung Morbus Bechterew，DVMB）14000名患者会员中的3400名随机挑选的会员。
总共有1068名DVMB会员和205名非会员对调查做出了回应。几乎所有这些人都表示，在确诊时他们至少收到了一条关于特别需要注意事项的信息。共有69%的人被告知日常锻炼的必要性，51%的人了解个体物理治疗的价值，38%的人知晓团体物理治疗的价值，37%的人知道保持直立姿势的必要性，33%的人被建议在康复中心待3周。不到30%的人被告知适当的运动、合适的工作条件、合适的椅子、床垫、枕头等，氡疗的价值或加入特定疾病患者组织的信息。对于患者目前认为最重要的问题，日常锻炼（50%）和工作及休闲时有足够的活动量（55%）被提及的频率最高。患者认为重要的其他方面包括平坦、坚硬的床垫（53%）、避免使用大枕头（42%）、工作时保持直立姿势（38%）、适当的运动（36%）以及不工作时也保持直立姿势（34%）。在DVMB会员中，46%参加过特定疾病的标准化患者教育，而非会员中只有31%（p<0.001）。
