Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, The Netherlands.
Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands.
Clin Rheumatol. 2019 Apr;38(4):1007-1015. doi: 10.1007/s10067-018-4358-x. Epub 2018 Nov 17.
Systemic sclerosis (SSc) is a chronic autoimmune disease with multiorgan involvement.
Identify preferences and priorities among patients and health care professionals regarding care for SSc patients in The Netherlands. Develop ideas to improve quality of care.
A structured approach was followed to collect information from different perspectives to prepare a working conference. Qualitative and quantitative data from patients (n = 650), rheumatologists (n = 167), nurses (n = 51), and health professionals (n = 85) from regional centers and university hospitals were collected. In February 2018, a working conference was organized. Seventy-seven persons (including 10 SSc patients) from different backgrounds discussed the identified themes and survey results. Ideas to improve health care were formulated and prioritized using nominal group technique.
Five key themes were identified: (1) shared care and multidisciplinary collaboration, (2) medical data exchange, (3) information for both patients and health care professionals, (4) patient empowerment, and (5) non-pharmacological care. Shared care was the preferred model of care in 49% of patients and 82% of physicians. However, current collaboration structures, especially between hospitals, should be improved. Suggestions for improvements were explicitly formulated agreements about referral, clear task division, treatment coordination, and exploration of novel ways to exchange medical records. The creation of a national web-based information hub was highly prioritized.
In this mixed-method study, broad-based consensus was achieved and recommendations were developed to improve health care for SSc patients. The approach, recommendations, and challenges summarized in this paper can be of use for health care professionals and other actors involved in patients with rare, chronic, and multisystem conditions.
系统性硬化症（SSc）是一种多器官受累的慢性自身免疫性疾病。
确定荷兰 SSc 患者护理方面患者和医疗保健专业人员的偏好和优先事项。提出改善护理质量的想法。
采用结构化方法从不同角度收集信息，为工作会议做准备。从区域中心和大学医院的患者（n=650）、风湿病学家（n=167）、护士（n=51）和卫生专业人员（n=85）收集定性和定量数据。2018 年 2 月，组织了一次工作会议。来自不同背景的 77 人（包括 10 名 SSc 患者）讨论了确定的主题和调查结果。使用名义群体技术制定并确定了改善医疗保健的想法。
确定了五个关键主题：（1）共同护理和多学科协作，（2）医疗数据交换，（3）患者和医疗保健专业人员的信息，（4）患者赋权，（5）非药物护理。共同护理是 49%的患者和 82%的医生首选的护理模式。然而，当前的协作结构，特别是医院之间的结构，应该得到改善。改进的建议包括明确转诊、明确分工、治疗协调以及探索交换医疗记录的新方法。建立一个全国性的基于网络的信息中心被高度优先考虑。
在这项混合方法研究中，达成了广泛的共识，并提出了改善 SSc 患者护理的建议。本文总结的方法、建议和挑战可用于医疗保健专业人员和涉及罕见、慢性和多系统疾病患者的其他参与者。
