The present situation and countermeasures of nursing service for patients with rare diseases in China
Objective To analyze the current situation of care services for rare diseases and put forward suggestions for improvement,in order to propose group care services system for rare diseases,improve the quality of life of rare diseases and their families,and promote social attention and support for rare diseases.Methods The literature research method was used to analyze relevant policies and literature analysis,evaluate the needs of care services for patients with rare diseases,analyze the existing relevant policies,systems,institutions,service mode and existing problems in China,and explore their impact on the quality and accessibility of care services.Results The rehabilitation care for patients with rare diseases is still blank in the medical service system.Family care cannot meet the care needs of patients and their families,and professional care services are in urgent need.However,care service policy in China has certain limitations for rare diseases,and the quantity and quality of existing care services cannot meet the growing demand for care.Conclusion To promote the construction of the care service system for rare diseases and improve the quality and accessibility of care services for rare diseases needs the support of the government and all sectors of society,improve the policy guarantee of care services for rare diseases,enrich the channels for obtaining funds,enrich the team of professional service personnel,and actively promote social participation and innovation cooperation.
rare diseasenursing servicessocial supportquality of life
NETL
NSTL
万方数据
