Developmental Profiles in Children and Young Adults with Alexander Disease.

IF 1.1 4区医学 Q4 CLINICAL NEUROLOGY Developmental Neurorehabilitation Pub Date : 2023-05-01 DOI:10.1080/17518423.2023.2209834

Laura Zampini, Lara Draghi, Paola Zanchi

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Abstract

Purpose: The study aims to describe the developmental profile of children and young adults with Alexander disease [AxD] infantile form, analyzing their clinical features, adaptive behavior and neuropsychological skills.

Methods: Participants were eight children or young adults (Mean age = 11 years; SD = 6.86; range = 5-23) and their parents. A multi-method approach was adopted to assess participant competencies: (1) an online parent survey, (2) a semi-structured interview with parents, and (3) a direct assessment of the participant's neuropsychological skills.

Results: Only four parents and their children completed all measures, and a common developmental profile could not be identified. The participants experienced substantial impairment in gross-motor skills, memory and narrative macrostructure. Most parents reported a regressive trend in at least one area.

Conclusions: The high individual variability and the regressive trend highlight the need for an accurate and periodic assessment of each individual's developmental profile.

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亚历山大病儿童和青年成人的发育概况。

目的:研究婴幼儿型亚历山大病儿童和青壮年的发育特点，分析其临床特征、适应行为和神经心理技能。方法:参与者为8名儿童或青少年(平均年龄= 11岁;sd = 6.86;范围= 5-23)和他们的父母。采用多种方法评估参与者的能力:(1)在线家长调查，(2)与家长进行半结构化访谈，(3)直接评估参与者的神经心理技能。结果:只有四位家长和他们的孩子完成了所有的测量，并不能确定一个共同的发展概况。参与者在粗大运动技能、记忆力和叙事宏观结构方面经历了实质性的损害。大多数家长报告了至少一个领域的倒退趋势。结论:高度的个体差异和回归趋势突出了对每个个体的发展概况进行准确和定期评估的必要性。

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

Developmental Neurorehabilitation CLINICAL NEUROLOGY-PEDIATRICS

CiteScore

3.10

自引率

0.00%

发文量

审稿时长

6-12 weeks

期刊介绍： Developmental Neurorehabilitation aims to enhance recovery, rehabilitation and education of people with brain injury, neurological disorders, and other developmental, physical and intellectual disabilities. Although there is an emphasis on childhood, developmental disability can be considered from a lifespan perspective. This perspective acknowledges that development occurs throughout a person’s life and thus a range of impairments or diseases can cause a disability that can affect development at any stage of life.