Dasher Nickolas, Zabel T Andrew, Garcia-Bonilla Maria, Jantzie Lauren L, Hamilton Mark G, Williams Michael A, Chau Monica J
Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, WA, 98195, USA.
Kennedy Krieger Institute, Baltimore, MD, 21205, USA.
Fluids Barriers CNS. 2024 Dec 31;21(1):109. doi: 10.1186/s12987-024-00602-z.
Hydrocephalus is a neurological disorder that impacts approximately 85 per 100,000 individuals worldwide and is associated with motor and cognitive impairments. While many advances in surgical interventions have helped substantially improve the survival rates and quality of life of those affected, there continues to be significant gaps in our understanding of the etiology of this heterogeneous condition as well as its specific neuropsychological and functional challenges across different phases of life. To address these limitations, the Hydrocephalus Association and Rudi Schulte Research Institute organized a workshop titled, "Improving Cognitive and Psychological Outcomes in Hydrocephalus", composed of top academics in the fields of hydrocephalus, cognition, and neuropsychology, as well as individuals with hydrocephalus or their caregivers. The purpose was to review the available evidence and propose pertinent areas of further research to improve the cognitive functioning, functional status, and quality of life of individuals with hydrocephalus. These topics included cognitive and neuropsychological assessments and daily-life function of children and adults living with hydrocephalus, biomarkers of cognitive function, animal modeling of hydrocephalus, and the longitudinal impact of hydrocephalus treatment. The following paper outlines four primary areas that warrant research: (1) neuropsychological phenotypes, (2) treatment-focused research considerations, (3) translational pre-clinical tools, and (4) establishing pathways for longitudinal care. Through the efforts of this group, the goal of this manuscript is to inspire and direct scientific and clinical inquiry towards these noted research priorities to further improve the lives of individuals with hydrocephalus and their families.
脑积水是一种神经系统疾病，全球每10万人中约有85人受其影响，且与运动和认知障碍有关。尽管手术干预方面的许多进展极大地提高了患者的生存率和生活质量，但我们对这种异质性疾病的病因以及其在生命不同阶段所面临的特定神经心理学和功能挑战的理解仍存在重大差距。为解决这些局限性，脑积水协会和鲁迪·舒尔特研究所组织了一次题为“改善脑积水患者的认知和心理结果”的研讨会，与会人员包括脑积水、认知和神经心理学领域的顶尖学者，以及脑积水患者或其护理人员。目的是回顾现有证据，并提出相关的进一步研究领域，以改善脑积水患者的认知功能、功能状态和生活质量。这些主题包括脑积水患儿和成人的认知与神经心理学评估及日常生活功能、认知功能的生物标志物、脑积水的动物模型，以及脑积水治疗的长期影响。以下论文概述了四个值得研究的主要领域：（1）神经心理学表型，（2）以治疗为重点的研究考量，（3）转化性临床前工具，以及（4）建立长期护理途径。通过该小组的努力，本手稿的目标是激发并引导针对这些既定研究重点的科学和临床探究，以进一步改善脑积水患者及其家庭的生活。
