Löffler Christian, Rudwaleit Martin, Lakomek Heinz-Jürgen, Stammann Carina, Hellmich Bernhard
Klinik für Innere Medizin, Rheumatologie, Pneumologie, Nephrologie und Diabetologie, medius Klinik Kirchheim, Lehrkrankenhaus der Universität Tübingen, Eugenstr. 3, 73230, Kirchheim unter Teck, Deutschland.
Klinik für Nephrologie, Endokrinologie, Hypertensiologie und Rheumatologie, Universitätsmedizin Mannheim, Medizinische Fakultät, Universität Heidelberg, Heidelberg, Deutschland.
Z Rheumatol. 2024 Jun;83(5):416-424. doi: 10.1007/s00393-023-01437-z. Epub 2023 Oct 13.
BACKGROUND/OBJECTIVES: Current data on the care of patients with vasculitis in Germany are scarce. Patient-reported outcome (PRO) questionnaires can capture aspects of the disease that escape conventional scores for disease activity, remission, and damage. For this reason, the Association of Rheumatological Acute Care Clinics (VRA) initiated a data analysis as part of the KOBRA quality project, the results of which are presented here.
Patients with vasculitis of vessels of any size or with polymyalgia rheumatica were included. The prospective survey included data on demographics, disease, pain, treatment, follow-up and satisfaction at the time of inpatient admission, discharge and follow-up after 2.5 months. All patients completed the AAV-PRO and EQ-5D-3L questionnaires on admission and follow-up.
In this study 420 patients were recruited and follow-up data were available from 302. On average, improvements were documented in all 5 dimensions of the EQ-5D, with the strongest effects in self-care and coping with activities of daily living. In the AAV-PRO, highly significant differences were seen in the domains systemic symptoms and physical functioning. Satisfaction with medical and nursing treatment was very high and did not correlate with pain level or with the AAV-PRO measures.
Under zreatment patient-reported outcomes improve at least partially in vasculitis patients. Satisfaction with medical treatment quality is independent of these outcomes.
背景/目的：德国血管炎患者护理方面的现有数据匮乏。患者报告结局（PRO）问卷能够捕捉到疾病中那些常规疾病活动、缓解及损伤评分所未涵盖的方面。因此，风湿急性护理诊所协会（VRA）发起了一项数据分析，作为KOBRA质量项目的一部分，本文展示了该分析结果。
纳入任何大小血管血管炎或风湿性多肌痛患者。前瞻性调查涵盖住院时、出院时以及2.5个月随访时的人口统计学、疾病、疼痛、治疗、随访及满意度数据。所有患者在入院及随访时均完成AAV-PRO和EQ-5D-3L问卷。
本研究招募了420名患者，302名患者有随访数据。平均而言，EQ-5D的所有5个维度均有改善记录，其中自我护理和应对日常生活活动方面改善最为明显。在AAV-PRO中，全身症状和身体功能领域存在高度显著差异。对医疗和护理治疗的满意度很高，且与疼痛程度或AAV-PRO指标无关。
在治疗过程中，血管炎患者报告的结局至少部分得到改善。对医疗质量的满意度与这些结局无关。
