脊柱裂护理的进展:走向尊严、包容和创新的全球之旅。

IF 0.8 Q4 PEDIATRICS
Jonathan Castillo, Judy K Thibadeau, Tim Brei, Heidi Castillo
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引用次数: 0

摘要

近十年来,《儿科康复医学杂志》(JPRM)关于脊柱裂(SB)的特刊已经成为定性的、最先进的和创新的脊柱裂研究的中心。有人指出,“蓝色大理石健康”概念是一种说明影响高危人群的被忽视疾病的地理分布趋势的政策框架,在说明诸如北美和欧洲等高收入国家的SB护理范例方面也可能占有一席之地。同时,JPRM已经开始为全球范围内的SB护理提供见解,无论是在全球北方还是在全球南方。此外,近年来,脊柱裂患者护理指南,脊柱裂协会(SBA)协同护理网络与疾病控制和预防中心的国家出生缺陷和发育障碍中心合作协议的产物,已经描绘了进展。SBA继续促进临床医生和研究人员之间的公开和面对面的对话。2025年脊柱裂临床护理会议由加州北部的Shriners儿童医院主办,包括SB社区的成年成员、家长、临床医生和研究人员的参与。随后,本期特刊收录了最初在本次会议上发表的最新文章。现在,在我们多元化和全球化的社会中,为受SB影响的人提供公平和可持续的发展机会,需要我们所有人来维护这一标准。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Advances in spina bifida care: The global journey toward dignity, inclusion, and innovation.

For nearly a decade, the special issue for spina bifida (SB) in the Journal of Pediatric Rehabilitation Medicine (JPRM) has become an epicenter for qualitative, state of the art, and innovative SB research. It has been noted that the concept of "blue marble health," a policy framework to illustrate trends in the geographic distribution of neglected diseases affecting at-risk populations, may also have a place in illustrating the SB care paradigm in high-income countries such as those in North America and Europe. Concurrently, JPRM has dawned to provide insight into SB care worldwide, both in the Global North as in the Global South. Also in recent years, the Guidelines for the Care of People with Spina Bifida, a product of the Spina Bifida Association (SBA) Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention, have mapped the advance. The SBA continues to catalyze open and in-person dialogue among clinicians and investigators. The 2025 Spina Bifida Clinical Care Meeting, hosted by Shriners Children's Northern California, included the involvement of adult members of the SB community, parents, clinicians, and researchers. Subsequently, this special issue includes state of the art articles initially presented at this conference. Now it is up to all of us to uphold the standard as we embark onto equitable and sustainable development of opportunities for those affected by SB across our diverse and global community.

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来源期刊
CiteScore
2.30
自引率
5.30%
发文量
139
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