Duke University School of Nursing, Durham, North Carolina, USA.
Department of Psychiatry and Behavioral Sciences, Duke University, Durham, North Carolina, USA.
Res Nurs Health. 2021 Apr;44(2):376-392. doi: 10.1002/nur.22118. Epub 2021 Mar 2.
Systemic sclerosis is a rare and incurable autoimmune disease in which patients are challenged with self-managing their disease. Systematic evaluation of the essential self-management intervention components and self-management outcomes is necessary to assess the state of the science of self-management for patients with systemic sclerosis. As such, the purpose of this systematic review was to identify and describe self-management interventions and their impact on self-management outcomes in adults with systemic sclerosis. Studies were included if they contained a self-management intervention, incorporated at least one self-management outcome identified as a common data element by the National Institute of Nursing Research (i.e., patient activation, self-efficacy, self-regulation, global health), and were conducted in adults with systemic sclerosis. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, PubMed, Cumulative Index of Nursing and Allied Health Literature, and Embase were searched from the inception of each database to March 2020, yielding a total of 215 studies. Of these reports, 16 met the inclusion criteria for this review. There was notable variability in the types of self-management interventions and their effects on key self-management outcomes. Self-management interventions focused on improving physical function through rehabilitation programs were the most common interventions (n = 7). The poor methodological quality of the studies included in this systematic review, however, limited the synthesis of and recommendations for self-management interventions in adults with systemic sclerosis. Future research in systemic sclerosis should include key self-management outcomes in larger, more rigorously designed studies to allow for comparisons across studies and to advance the science of self-management.
系统性硬化症是一种罕见且无法治愈的自身免疫性疾病，患者需要自我管理疾病。为了评估系统性硬化症患者自我管理的科学现状，有必要对基本自我管理干预措施和自我管理结果进行系统评价。因此，本系统评价的目的是确定并描述自我管理干预措施及其对成人系统性硬化症患者自我管理结果的影响。如果研究包含自我管理干预措施，并且包含国家护理研究所确定的至少一个自我管理结果（即患者激活、自我效能、自我调节、总体健康），则将其纳入研究。本研究使用系统评价和荟萃分析报告的首选项目指南，从每个数据库的开始日期到 2020 年 3 月，在 PubMed、Cumulative Index of Nursing and Allied Health Literature 和 Embase 中进行了搜索，共产生了 215 项研究。在这些报告中，有 16 项符合本综述的纳入标准。自我管理干预措施的类型及其对关键自我管理结果的影响存在显著差异。以改善康复计划中的身体功能为重点的自我管理干预措施最为常见（n=7）。然而，本系统评价中纳入的研究方法质量较差，限制了对成人系统性硬化症自我管理干预措施的综合和推荐。未来的系统性硬化症研究应包括关键的自我管理结果，以更大、更严谨的设计研究来进行研究间比较，并推进自我管理科学的发展。
