皮肤：脊髓脊膜膨出患者护理指南。
Integument: Guidelines for the care of people with spina bifida.
机构信息
Minnesota State University-Mankato, Edina, MN, USA.
Children's Hospital of Michigan, Detroit, MI, USA.
出版信息
J Pediatr Rehabil Med. 2020;13(4):543-548. doi: 10.3233/PRM-200723.
PURPOSE
Skin-related issues have a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Data presented by select clinics that participate in the National Spina Bifida Patient Registry reported that 26% of individuals had a history of pressure injuries with 19% having had one in the past year. The spina bifida community lack direct guidelines on prevention of these and other skin related issues. The Integument (skin) Guidelines focus on prevention, not treatment, of existing problems.
METHODS
Using a consensus building methodology, the guidelines were written by experts in spina bifida and wound care.
RESULTS
The guidelines include age-grouped, evidence-based guidelines written in the context of an understanding of the whole person. They are presented in table format according to the age of the person with spina bifida.
CONCLUSION
These guidelines present a standardized approach to prevention of skin-related issues in spina bifida. Discovering what results in successful minimization of skin-related issues with testing of technology or prevention strategies is the next step in protecting this vulnerable population.
目的
皮肤相关问题对患有脊柱裂的人群的健康、日常生活活动和生活质量有重大影响。参与国家脊柱裂患者注册中心的精选诊所提供的数据显示，26%的人有压疮病史，19%的人在过去一年中有过压疮。脊柱裂社区缺乏预防这些和其他皮肤相关问题的直接指南。《皮肤指南》侧重于预防现有的皮肤问题，而不是治疗。
方法
使用共识制定方法，由脊柱裂和伤口护理方面的专家编写指南。
结果
指南包括按年龄分组的、基于证据的指南，是在了解整个人的情况下编写的。根据患有脊柱裂的人的年龄，以表格形式呈现。
结论
这些指南为预防脊柱裂患者的皮肤相关问题提供了标准化方法。通过测试技术或预防策略，发现成功减少皮肤相关问题的结果，是保护这一脆弱人群的下一步。
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