Research Cluster D2L2, FernUniversität in Hagen, 58097 Hagen, Germany.
German Association for ME/CFS, 20146 Hamburg, Germany.
Medicina (Kaunas). 2021 Jun 23;57(7):646. doi: 10.3390/medicina57070646.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe illness with the hallmark symptom of Post-Exertional Malaise (PEM). Currently, no biomarkers or established diagnostic tests for ME/CFS exist. In Germany, it is estimated that over 300,000 people are affected by ME/CFS. Research from the United States and the UK shows that patients with ME/CFS are medically underserved, as they face barriers to medical care access and are dissatisfied with medical care. The first aim of the current research was to investigate whether patients with ME/CFS are medically underserved in Germany in terms of access to and satisfaction with medical care. Second, we aimed at providing a German-language version of the DePaul Symptom Questionnaire Short Form (DSQ-SF) as a tool for ME/CFS diagnostics and research in German-speaking countries. The current research conducted an online questionnaire study in Germany investigating the medical care situation of patients with ME/CFS. The questionnaire was completed by 499 participants who fulfilled the Canadian Consensus Criteria and reported PEM of 14 h or longer. Participants frequently reported geographic and financial reasons for not using the available medical services. Furthermore, they reported low satisfaction with medical care by the physician they most frequently visited due to ME/CFS. The German version of the DSQ-SF showed good reliability, a one-factorial structure and construct validity, demonstrated by correlations with the SF-36 as a measure of functional status. Findings provide evidence that patients with ME/CFS in Germany are medically underserved. The German-language translation of the DSQ-SF provides a brief, reliable and valid instrument to assess ME/CFS symptoms to be used for research and clinical practice in German-speaking countries. Pathways to improve the medical care of patients with ME/CFS are discussed.
肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种严重的疾病，其标志症状是运动后不适（PEM）。目前，尚无 ME/CFS 的生物标志物或既定诊断测试。在德国，估计有超过 30 万人受到 ME/CFS 的影响。来自美国和英国的研究表明，ME/CFS 患者的医疗服务不足，因为他们在获得医疗保健方面存在障碍，并且对医疗保健不满意。当前研究的第一个目的是调查德国 ME/CFS 患者在获得和对医疗保健的满意度方面是否医疗服务不足。其次，我们旨在提供德保罗症状问卷短表（DSQ-SF）的德语版本，作为德语国家 ME/CFS 诊断和研究的工具。 当前的研究在德国进行了一项在线问卷调查研究，调查了 ME/CFS 患者的医疗保健状况。该问卷由 499 名符合加拿大共识标准并报告 PEM 持续 14 小时或更长时间的参与者完成。 参与者经常报告由于地理和财务原因，他们没有使用现有的医疗服务。此外，他们报告说，由于 ME/CFS，他们最常去看的医生对医疗保健的满意度较低。DSQ-SF 的德语版本显示出良好的可靠性、单因素结构和构念效度，与 SF-36 作为功能状态的衡量标准相关。 研究结果表明，德国的 ME/CFS 患者医疗服务不足。DSQ-SF 的德语翻译提供了一种简短、可靠且有效的工具，可用于评估 ME/CFS 症状，用于德语国家的研究和临床实践。讨论了改善 ME/CFS 患者医疗保健的途径。
