{"title":"亚历山大病儿童和青年成人的发育概况。","authors":"Laura Zampini, Lara Draghi, Paola Zanchi","doi":"10.1080/17518423.2023.2209834","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>The high individual variability and the regressive trend highlight the need for an accurate and periodic assessment of each individual's developmental profile.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"26 4","pages":"253-261"},"PeriodicalIF":1.1000,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Developmental Profiles in Children and Young Adults with Alexander Disease.\",\"authors\":\"Laura Zampini, Lara Draghi, Paola Zanchi\",\"doi\":\"10.1080/17518423.2023.2209834\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>The high individual variability and the regressive trend highlight the need for an accurate and periodic assessment of each individual's developmental profile.</p>\",\"PeriodicalId\":51227,\"journal\":{\"name\":\"Developmental Neurorehabilitation\",\"volume\":\"26 4\",\"pages\":\"253-261\"},\"PeriodicalIF\":1.1000,\"publicationDate\":\"2023-05-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Developmental Neurorehabilitation\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/17518423.2023.2209834\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Developmental Neurorehabilitation","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/17518423.2023.2209834","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Developmental Profiles in Children and Young Adults with Alexander Disease.
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.
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.
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