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我们能否做得更好,以支持患有脑瘫的年轻人在成年后顺利过渡?对当前和未来过渡实践的综述。

Can we do better supporting young adults with cerebral palsy as they navigate adulthood? A review of current and future transitional practices.

机构信息

1Division of Pediatric Neurosurgery, Children's Hospital of Eastern Ontario (CHEO), Ottawa.

2University of Ottawa.

出版信息

Neurosurg Focus. 2024 Aug 1;57(2):E14. doi: 10.3171/2024.5.FOCUS24215.

Abstract

OBJECTIVE

Patients with cerebral palsy (CP) face lifelong consequences of their condition, and their healthcare needs evolve as they age. Transitional care for these patients is not universally available and various models have been described. In this article, the authors review the current literature surrounding transitional care for patients with CP, focusing predominantly on the neurosurgical aspects of transitional care, and they describe current approaches adopted by programs in North America. They further describe their own experience developing a transitional care clinic for patients with CP, as well as the integration of this program with a multidisciplinary clinic to address the specific challenges that growing patients face in our region.

METHODS

The authors performed a literature review to identify models, barriers, and assessments of effective transitional care for CP patients. They also reviewed the recommendations of various professional societies regarding transitional care practices. They performed qualitative analysis of the relevant literature.

RESULTS

Transitional care has been broadly categorized into transitional care clinics with multidisciplinary teams and facilitator-led transitional care. CP patients have to overcome a variety of barriers, including those from within the healthcare system as well as environmental and personal, during the period of their transition. These challenges are all interconnected, and navigation requires healthcare professionals to work closely with patients and their caregivers. Multiple instruments are described to measure successful transition, which is likely a reflection of the unique needs that a patient may require. Current guidelines recommend that neurosurgeons select a suitable model of care based on their own local practice and available services, develop a well-defined transition plan, and identify a primary transition facilitator or care coordinator.

CONCLUSIONS

Providing effective transitional care to CP patients remains challenging given the different models of care and the barriers faced by them during the period of transition. In developing a transitional care program for these patients, attention must be given to the resources that are available regionally, with an effort to incorporate the best practices from successful transitional care programs.

摘要

目的

脑瘫(CP)患者面临着其病情的终身后果,随着年龄的增长,他们的医疗需求也在不断发展。这些患者的过渡护理并非普遍可用,并且已经描述了各种模式。在本文中,作者回顾了围绕 CP 患者过渡护理的现有文献,主要关注过渡护理的神经外科方面,并描述了北美计划中采用的当前方法。他们进一步描述了自己为 CP 患者开发过渡护理诊所的经验,以及该计划与多学科诊所的整合,以解决我们地区成长中的患者面临的具体挑战。

方法

作者进行了文献回顾,以确定 CP 患者过渡护理的模式、障碍和评估。他们还回顾了各种专业协会关于过渡护理实践的建议。他们对相关文献进行了定性分析。

结果

过渡护理已广泛分为多学科团队和促进者主导的过渡护理的过渡护理诊所。CP 患者在过渡期间必须克服各种障碍,包括医疗保健系统内部以及环境和个人方面的障碍。这些挑战是相互关联的,导航需要医疗保健专业人员与患者及其护理人员密切合作。有多种工具可用于衡量成功的过渡,这可能反映了患者可能需要的独特需求。目前的指南建议神经外科医生根据自己的当地实践和可用服务选择合适的护理模式,制定明确的过渡计划,并确定主要的过渡促进者或护理协调员。

结论

鉴于不同的护理模式和患者在过渡期间面临的障碍,为 CP 患者提供有效的过渡护理仍然具有挑战性。在为这些患者开发过渡护理计划时,必须注意区域内可用的资源,并努力从成功的过渡护理计划中汲取最佳实践。

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