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视神经脊髓炎谱系疾病患者生活质量研究进展
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Abstract:
视神经脊髓炎谱系疾病(NMOSD)具有高复发和高致残性的特点，早期就可存在致盲或者截瘫，并且伴随其他不同的临床症状。随着疾病复发，患者的伤残程度不断上升，对患者的日常生活和精神健康，以及生活质量，都有很大影响。我国对于NMOSD的研究重心多倾向于疾病的发病机制、诊断及治疗等方面，生存质量尚未引起广泛重视，且针对生活质量的相关干预也较少。为了更全面客观地了解NMOSD患者的生活质量及影响因素，现就对影响NMOSD患者生活质量的评价工具和相关因素进行综述，旨在为临床相关研究和临床实践提供依据。建议在以后的临床工作中可以开展基于循证的个性化护理干预，进一步探索适合我国临床实际且能提高NMOSD患者生活质量的有效干预方法，为构建系统化干预方案提供依据。
Optic neuromyelitis optica spectrum disorders (NMOSD) are characterized by high recurrence and disability, with blindness or paraplegia present early and accompanied by other different clinical symptoms. The degree of disability increases with disease recurrence and has a significant impact on patients’ daily life and mental health, as well as on their quality of life. The focus of research on NMOSD in China has been on the pathogenesis, diagnosis and treatment of the disease, but quality of life has not been widely emphasized, and there are few interventions for quality of life. In order to have a more comprehensive and objective understanding of the quality of life of NMOSD patients and the factors influencing it, the evaluation tools and related factors affecting the quality of life of NMOSD patients are reviewed with the aim of providing a basis for clinical research and clinical practice. It is suggested that evidence-based personalized nursing interventions can be carried out in future clinical work to further explore effective intervention methods that are suitable for our clinical reality and can improve the quality of life of NMOSD patients, and provide a basis for the construction of systematic intervention programs.
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