Habermann-Horstmeier Lotte, Horstmeier Lukas Maximilian
Leitung, Villingen Institute of Public Health, Villingen-Schwenningen, Germany.
Sektion für Versorgungsforschung und Rehabilitationsforschung, Universitätsklinikum Freiburg, Medizinische Fakultät, Albert-Ludwigs-Universität Freiburg, Germany.
Gesundheitswesen. 2024 Oct;86(10):625-632. doi: 10.1055/a-2323-9507. Epub 2024 May 10.
The disease ME/CFS is unknown to many doctors in Germany. Within the healthcare system, significant deficits in dealing with ME/CFS patients have been repeatedly revealed. Hence, the aim of the present study was to identify the specialties of the doctors consulted by ME/CFS patients and to find out whether information on the medical procedure in the context of the diagnosis process can be derived from this.
As part of the APAV-ME/CFS survey, the quantitative responses of 674 adult ME/CFS sufferers (>20 y.; 554 ♀, 120 ♂) who already had a medical ME/CFS diagnosis were statistically examined. The sampling was done by self-activation and via the snowball principle. The data were primarily evaluated descriptively. An analysis of variance was carried out to consider possible relationships.
Almost a quarter of the patients said they had suffered from ME/CFS for 6 to 10 years. Diagnosis was made within 10 years of disease onset in 62%. For 6.4% it took 21-40 years. 75% of the participants consulted 6 to 15 different doctors from a wide range of disciplines in the course of the disease, in particular from general medicine, neurology, internal medicine and psychosomatics/psychiatry. Diagnosis was made in particular by GPs and immunologists. On average, the test persons named 11 mostly neuroregulatory symptoms.
The results suggest that in the context of finding a diagnosis in Germany for ME/CFS, referral behaviour to specialists based on single ME/CFS symptoms or rather arbitrary contacting of doctors from a wide variety of disciplines has prevailed so far. Therefore, training and further education measures on the subject of ME/CFS are urgently needed in all specialist disciplines in the resident, inpatient and rehabilitation sectors.
德国许多医生对肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)这种疾病并不了解。在医疗保健系统中,处理ME/CFS患者方面的重大缺陷已被多次揭示。因此,本研究的目的是确定ME/CFS患者咨询的医生的专业领域,并查明是否能从中得出诊断过程中医疗程序的相关信息。
作为APAV-ME/CFS调查的一部分,对674名已被医学诊断为ME/CFS的成年患者(>20岁;554名女性,120名男性)的定量回答进行了统计分析。抽样是通过自我激活和雪球原则进行的。数据主要进行描述性评估。进行方差分析以考虑可能的关系。
近四分之一的患者表示他们患有ME/CFS已达6至10年。62%的患者在疾病发作后10年内得到诊断。6.4%的患者则花费了21至40年。75%的参与者在患病过程中咨询了6至15名来自广泛学科的不同医生特别包括全科医学、神经学、内科和身心医学/精神病学领域。诊断尤其由全科医生和免疫学家做出。平均而言,测试对象列出了11种主要的神经调节症状。
结果表明,在德国为ME/CFS进行诊断的背景下,迄今为止,基于单一的ME/CFS症状转诊至专科医生或相当随意地联系来自各种学科的医生的行为占了上风。因此,住院、住院治疗和康复部门的所有专科领域都迫切需要开展关于ME/CFS主题的培训和继续教育措施。