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Abstract
Purpose. 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.
Method. 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.
Results. 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.
Conclusions. Although these findings must be validated, they appear to be promising and can contribute to understanding the daily functioning features of patients with AHC.
Acknowledgements
We thank Rosaria Vavassori, President of the Associazione Italiana Sindrome dell'Emiplegia Alternante for the recruitment of families and her encouraging support in each phase of the study. We would also like to thank all members of the Scientific Board of the Association who verified the diagnosis of AHC by performing a detailed evaluation of the patients referred to the Association. Finally, we are grateful to all the parents who participated.