Similuk Morgan N, Wang Angela, Lenardo Michael J, Erby Lori H
National Institute of Allergy and Infectious Disease, NIH, 10 Center Drive, Building 10, Room 12C103, Bethesda, MD, USA.
Clinical Research Directorate/Clinical Monitoring Research Program, Leidos Biomedical Research, Inc., Frederick National Laboratory for Cancer Research, Frederick, MD, 21702, USA.
J Clin Immunol. 2016 Feb;36(2):123-33. doi: 10.1007/s10875-016-0241-1. Epub 2016 Feb 12.
The clinical immunology literature is punctuated with research on psychosocial dimensions of illness. Studies investigating the lived experiences and stated needs of patients with primary immune deficiencies and their families are essential to improving clinical management and determining the research questions that matter to patients and other stakeholders. Yet, to move the field forward, a systematic review of literature and proposed agenda is needed.
A systematic review was conducted via PubMed and Scopus to include original research on psychological, social, or behavioral aspects of primary immune deficiencies published between 1999 and 2015. A Title/Abstract keyword search was conducted, 317 candidate article abstracts were manually reviewed, and forward/backward reference searches were completed.
Twenty-nine studies met inclusion criteria. These illuminate the complex psychological, social, and emotional experiences of primary immune deficiency. Themes included the potential for negative psychosocial impact from disease; adaptation over time; the multi-dimensional assessments of quality of life; familial impact; the important roles of hope, developing a sense of control, social support; and addressing anxiety/depression in our patients and their families. Methodological considerations and areas for improvement are discussed.
We propose the research agenda focus on study creativity and rigor, with improved engagement with existing literature and critical study design (e.g., methodology with adequate statistical power, careful variable selection, etc.). This review highlights opportunities to advance psychosocial research and bring a brighter future to clinicians, researchers, and families affected by primary immune deficiency.
临床免疫学文献中充斥着关于疾病心理社会层面的研究。调查原发性免疫缺陷患者及其家庭的生活经历和明确需求的研究，对于改善临床管理以及确定对患者和其他利益相关者至关重要的研究问题而言必不可少。然而，为推动该领域向前发展，需要对文献进行系统综述并提出议程。
通过PubMed和Scopus进行系统综述，纳入1999年至2015年间发表的关于原发性免疫缺陷心理、社会或行为方面的原创研究。进行了标题/摘要关键词搜索，人工审阅了317篇候选文章摘要，并完成了向前/向后参考文献搜索。
29项研究符合纳入标准。这些研究揭示了原发性免疫缺陷复杂的心理、社会和情感体验。主题包括疾病产生负面心理社会影响的可能性；随时间的适应情况；生活质量的多维度评估；家庭影响；希望、培养控制感、社会支持的重要作用；以及解决患者及其家庭中的焦虑/抑郁问题。讨论了方法学考量和改进领域。
我们建议研究议程应注重研究的创新性和严谨性，更好地结合现有文献并采用严谨的研究设计（例如，具有足够统计效力的方法、谨慎选择变量等）。本综述突出了推进心理社会研究的机会，并为受原发性免疫缺陷影响的临床医生、研究人员和家庭带来更光明的未来。
