[Formula: see text] Neuropsychological assessment in rare pediatric neurogenetic disorders: considerations for cross-cultural clinical research.

IF 1.6 3区 心理学 Q3 CLINICAL NEUROLOGY
Child Neuropsychology Pub Date : 2024-08-01 Epub Date: 2023-11-20 DOI:10.1080/09297049.2023.2283939
Veronica Bordes Edgar, Karen A Dorsman, Daniel Horton, Souad Messahel, Beatriz MacDonald
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引用次数: 0

Abstract

Neuropsychological assessment in rare neurodevelopmental disorders has provided clinicians and researchers with a more comprehensive view of natural history as well as opportunities for additional endpoints in treatment trials. While challenges to protocol development have been addressed in the literature, cultural considerations have been overly broad resulting in limited utility when including mixed international samples. Using experiences over the past five years with the development of ten different protocols for neurogenetic rare diseases, this paper presents further considerations for protocol development that are culturally sensitive to international samples. Recommendations are offered across areas including participants from multiple countries; cognitive, sensory and motor impairments; psychometrics; and assessment logistics. A neuropsychological assessment selection checklist that guides researchers and clinicians through considerations and a standard operating procedure that provides guidance on thinking through the assessment process are offered.

罕见小儿神经遗传疾病的神经心理学评估:跨文化临床研究的考虑。
罕见神经发育障碍的神经心理学评估为临床医生和研究人员提供了更全面的自然史观点,并为治疗试验提供了更多终点的机会。虽然文献中已经解决了协议制定的挑战,但文化考虑过于广泛,导致在包括混合国际样本时效用有限。利用过去五年来制定的十种不同的神经遗传罕见病方案的经验,本文提出了对国际样本具有文化敏感性的方案制定的进一步考虑。在各个领域提出建议,包括来自多个国家的参与者;认知、感觉和运动障碍;心理测验学;以及评估后勤。一个神经心理学评估选择清单,指导研究人员和临床医生通过考虑和一个标准的操作程序,提供了通过评估过程的思考指导。
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来源期刊
Child Neuropsychology
Child Neuropsychology 医学-临床神经学
CiteScore
4.10
自引率
9.10%
发文量
71
审稿时长
>12 weeks
期刊介绍: The purposes of Child Neuropsychology are to: publish research on the neuropsychological effects of disorders which affect brain functioning in children and adolescents, publish research on the neuropsychological dimensions of development in childhood and adolescence and promote the integration of theory, method and research findings in child/developmental neuropsychology. The primary emphasis of Child Neuropsychology is to publish original empirical research. Theoretical and methodological papers and theoretically relevant case studies are welcome. Critical reviews of topics pertinent to child/developmental neuropsychology are encouraged. Emphases of interest include the following: information processing mechanisms; the impact of injury or disease on neuropsychological functioning; behavioral cognitive and pharmacological approaches to treatment/intervention; psychosocial correlates of neuropsychological dysfunction; definitive normative, reliability, and validity studies of psychometric and other procedures used in the neuropsychological assessment of children and adolescents. Articles on both normal and dysfunctional development that are relevant to the aforementioned dimensions are welcome. Multiple approaches (e.g., basic, applied, clinical) and multiple methodologies (e.g., cross-sectional, longitudinal, experimental, multivariate, correlational) are appropriate. Books, media, and software reviews will be published.
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