Proposed updated description of cerebral palsy

IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY
Bernard Dan, Peter Rosenbaum, Lucinda Carr, Martin Gough, John Coughlan, Nonyelum Nweke
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引用次数: 0

Abstract

‘Cerebral palsy’ (‘CP’) is a widely used descriptive label for a spectrum of motor impairments caused by non-progressive brain injury or malformation occurring during early development. Advances in research have significantly refined our understanding of CP, including insights into its genetic, inflammatory, and neurophysiological underpinnings. Research across global contexts, including low- and middle-income countries, has expanded knowledge of clinical features. Shifting societal perceptions, driven by individuals with lived experience, have further influenced how CP is understood, challenging ableist attitudes and promoting inclusive frameworks. Additionally, increased recognition of the needs and experiences of adults with CP has highlighted the importance of further developing appropriate services. The primary aim of this paper is to propose an updated description of CP, developed through a collaborative, multidisciplinary process, as a preliminary formulation that integrates stakeholder perspectives at this stage of the process. By framing it as a foundation for further discussion and refinement, the manuscript emphasizes the output itself rather than the process of its development. A comprehensive stakeholder analysis and mapping approach ensured broad representation, including individuals with CP, families, clinicians, researchers, advocacy groups, and others. Data were collected through surveys, interviews, focus groups, and workshops, facilitating a global dialogue that combined the expertise of those with lived experience with that of clinicians. The description is intended to serve as a preliminary framework to guide clinical practice, research, and policy, emphasizing a shared understanding of CP. The proposed updated description thus lays the foundation for continued refinement, emphasizing the importance of collaboration in advancing the care and inclusion of individuals with CP.

建议更新脑瘫的描述
“脑瘫”(CP)是一个广泛使用的描述性标签,用于描述由早期发育期间发生的非进行性脑损伤或畸形引起的一系列运动障碍。研究的进展大大改善了我们对CP的理解,包括对其遗传、炎症和神经生理基础的见解。包括低收入和中等收入国家在内的全球范围内的研究扩大了对临床特征的了解。在个人生活经验的推动下,社会观念的转变进一步影响了人们对残疾歧视的理解,挑战了残疾主义的态度,促进了包容性框架的发展。此外,越来越多的人认识到成年CP患者的需求和经历,这凸显了进一步发展适当服务的重要性。本文的主要目的是提出一个更新的CP描述,通过一个协作的,多学科的过程,作为一个初步的公式,整合了利益相关者的观点,在这一阶段的过程。通过将其作为进一步讨论和改进的基础,手稿强调了输出本身,而不是其发展过程。全面的利益相关者分析和绘图方法确保了广泛的代表性,包括CP患者、家庭、临床医生、研究人员、倡导团体和其他人。通过调查、访谈、焦点小组和研讨会收集数据,促进了将有实际经验的人员的专业知识与临床医生的专业知识相结合的全球对话。该描述旨在作为指导临床实践、研究和政策的初步框架,强调对CP的共同理解。因此,拟议的更新描述为继续完善奠定了基础,强调了合作在推进CP患者的护理和包容方面的重要性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
7.80
自引率
13.20%
发文量
338
审稿时长
3-6 weeks
期刊介绍: Wiley-Blackwell is pleased to publish Developmental Medicine & Child Neurology (DMCN), a Mac Keith Press publication and official journal of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the British Paediatric Neurology Association (BPNA). For over 50 years, DMCN has defined the field of paediatric neurology and neurodisability and is one of the world’s leading journals in the whole field of paediatrics. DMCN disseminates a range of information worldwide to improve the lives of disabled children and their families. The high quality of published articles is maintained by expert review, including independent statistical assessment, before acceptance.
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