Department of Child Neuropsychiatry and Neurorehabilitation, IRCCS E.Medea Associazione La Nostra Famiglia, Bosisio Parini (LC), Italy.
Disabil Rehabil. 2009;31 Suppl 1:S108-15. doi: 10.3109/09638280903317781.
To examine the functioning of patients with alternating hemiplegia of childhood (AHC), a very rare clinical condition manifesting with recurrent episodes of hemiplegia lasting from few minutes to several days, paroxysmal occurrence of tonic/dystonic attacks and other autonomic disturbances. Furthermore, patients exhibit chronic disabilities as well as mental retardation, epilepsy and motor disorders that affect the patients' everyday functioning to a considerable extent.
Data about 25 patients with AHC (F = 13) aged 3-34 years were collected with International Classification of Functioning Disability and Health (ICF) questionnaires. Data analysis was carried out on four age groups: 3-6, 7-12, 13-18 and >18 years, using only the ICF questionnaires' cross-age items.
In the body functions component, paying attention, seeing, muscle tones were common problems for all age groups. In the activity and participation component, all participants showed problems in basic interpersonal interactions. Finally, in the environmental factors component, barriers concern the climate and health services. On the other hand, families reported adequate support from social services.
Although these findings must be validated, they appear to be promising and can contribute to understanding the daily functioning features of patients with AHC.
研究交替性偏瘫儿童（AHC）的功能状况。AHC 是一种非常罕见的临床病症，表现为反复发作的偏瘫，持续时间从几分钟到几天不等，伴有阵发性强直/阵挛发作和其他自主神经紊乱。此外，患者还存在慢性残疾、智力迟钝、癫痫和运动障碍，这些问题极大地影响了患者的日常生活功能。
采用国际功能、残疾和健康分类（ICF）问卷，收集了 25 名 AHC 患者（F = 13）的数据，年龄 3-34 岁。仅使用 ICF 问卷的跨年龄项目，对 4 个年龄组（3-6 岁、7-12 岁、13-18 岁和>18 岁）进行数据分析。
在身体功能部分，注意力、视力、肌肉张力是所有年龄组的常见问题。在活动和参与部分，所有参与者在基本人际互动方面都存在问题。最后，在环境因素部分，障碍与气候和医疗服务有关。另一方面，家庭报告社会服务提供了足够的支持。
尽管这些发现有待验证，但它们似乎很有前景，可以帮助我们了解 AHC 患者的日常功能特征。
