SSc是一种影响身心健康的复杂CTD。疲劳,手功能丧失,和RP是系统性硬化症最常见的疾病特异性症状。这项研究旨在为这些症状的非药物治疗制定共识和循证建议。
成立了由20名荷兰专家组成的多学科工作组。在商定了制定建议的方法后,我们对有关患者教育和治疗的临床相关问题进行了统计.在面对面的专案组会议上,建议草案是通过系统结构化的讨论产生的,遵循名义分组技术。为了支持这些建议,直到2020年9月,在MEDLINE和其他六个数据库中进行了广泛的文献检索,并进行了20篇关键的系统综述,随机对照试验,并选择了已发布的建议。此外,关于RP和数字溃疡的非药物建议咨询了13名荷兰医学专家。对于每个建议,确定了证据水平和协议水平。
制定了41项证据和基于共识的建议,和34,关于疲劳的治疗和患者教育,手功能丧失,和RP/数字溃疡相关的问题,得到了工作组的批准.
这34项建议为系统性硬化症患者三种最常见症状的非药物治疗提供了指导。建议可指导转介卫生专业人员,告知非药物干预的内容,并可用于开发国家和国际研究生教育产品。
SSc is a complex CTD affecting mental and physical health. Fatigue, hand function loss, and RP are the most prevalent disease-specific symptoms of systemic sclerosis. This study aimed to develop
consensus and evidence-based recommendations for non-pharmacological treatment of these symptoms.
A multidisciplinary task force was installed comprising 20 Dutch experts. After agreeing on the method for formulating the recommendations, clinically relevant questions about patient education and treatments were inventoried. During a face-to-face task force meeting, draft recommendations were generated through a systematically structured discussion, following the nominal group technique. To support the recommendations, an extensive literature search was conducted in MEDLINE and six other databases until September 2020, and 20 key systematic reviews, randomized controlled trials, and published recommendations were selected. Moreover, 13 Dutch medical specialists were consulted on non-pharmacological advice regarding RP and digital ulcers. For each recommendation, the level of evidence and the level of agreement was determined.
Forty-one evidence and
consensus-based recommendations were developed, and 34, concerning treatments and patient education of fatigue, hand function loss, and RP/digital ulcers-related problems, were approved by the task force.
These 34 recommendations provide guidance on non-pharmacological treatment of three of the most frequently described symptoms in patients with systemic sclerosis. The proposed recommendations can guide referrals to health professionals, inform the content of non-pharmacological interventions, and can be used in the development of national and international postgraduate educational offerings.