Life with a Primary Immune Deficiency: a Systematic Synthesis of the Literature and Proposed Research Agenda

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• 作者：Morgan N. Similuk ; Angela Wang ; Michael J. Lenardo…
• 关键词：Quality of life ; psychosocial ; primary immune deficiency ; patient ; centered
• 刊名：Journal of Clinical Immunology
• 出版年：2016
• 出版时间：February 2016
• 年：2016
• 卷：36
• 期：2
• 页码：123-133
• 全文大小：356 KB
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• 作者单位：Morgan N. Similuk (1)
  Angela Wang (2)
  Michael J. Lenardo (1)
  Lori H. Erby (3)
  
  1. National Institute of Allergy and Infectious Disease, NIH, 10 Center Drive, Building 10, Room 12C103, Bethesda, MD, USA
  2. Clinical Research Directorate/Clinical Monitoring Research Program, Leidos Biomedical Research, Inc., Frederick National Laboratory for Cancer Research, Frederick, MD, 21702, USA
  3. National Human Genome Research Institute, NIH, Bethesda, MD, USA
  
• 刊物类别：Biomedical and Life Sciences
• 刊物主题：Biomedicine
  Immunology
  Infectious Diseases
  Internal Medicine
  Medical Microbiology
  
• 出版者：Springer Netherlands
• ISSN：1573-2592

文摘

Purpose 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.