Novakovich Elaine, Grayson Peter C
National Institutes of Health/NIAMS, Vasculitis Translational Research Program, Bethesda, MD 20892, United States.
National Institutes of Health/NIAMS, Vasculitis Translational Research Program, Bethesda, MD 20892, United States.
Presse Med. 2015 Jun;44(6 Pt 2):e267-72. doi: 10.1016/j.lpm.2015.01.016. Epub 2015 May 16.
Advances in clinical care for patients with vasculitis have improved survival rates and created new challenges related to the ongoing management of chronic disease. Lack of curative therapies, burden of disease, treatment-related side effects, and fear of relapse contribute to patient-perceived reduction in quality of life. Patient-held beliefs about disease and priorities may differ substantially from the beliefs of their health care providers, and research paradigms are shifting to reflect more emphasis on understanding vasculitis from the patient's perspective. Efforts are ongoing to develop disease outcome measures in vasculitis that better represent the patient experience. Health care providers who care for patients with vasculitis should be sensitive to the substantial burdens of disease commonly experienced by patients living with the disease and should strive to provide comprehensive care directed towards the medical and biopsychological needs of these patients.
血管炎患者临床护理的进展提高了生存率，但也给慢性病的持续管理带来了新挑战。缺乏治愈性疗法、疾病负担、治疗相关副作用以及对复发的恐惧，导致患者感觉生活质量下降。患者对疾病的看法和优先事项可能与医护人员的看法有很大差异，研究范式正在转变，以更加强调从患者角度理解血管炎。目前正在努力制定更能体现患者体验的血管炎疾病结局指标。照顾血管炎患者的医护人员应敏锐意识到患者在疾病中普遍承受的沉重负担，并应努力提供针对这些患者医疗和生物心理需求的全面护理。
