Psychosocial impact of narcolepsy in children and adolescents

Abstract

Despite the likelihood that psychological and social complications of narcolepsy in children and adolescents appear to be widespread and potentially severe, the topic has been relatively neglected. A number of anecdotal and impressionistic accounts, based on clinical experience, have been published and have provided valuable insights into the wide range of possible adverse effects, but systematic empirical studies are very few. Both the clinical care of individual young patients and research projects need to take a wide-ranging view of the ways in which psychosocial problems can arise and also their diverse nature. Important issues which remain to be addressed by research include identifying particular aspects of narcolepsy (specific to the condition or shared with other sleep disorders) that put the child at risk of these problems. Standardised and comprehensive assessments, generally agreed to be relevant (rather than employed piecemeal from one study to another), are required to identify cases of narcolepsy in young people, to document psychosocial problems, and for the evaluation of preventive and therapeutic measures. The subject is ripe for large-scale collaborative projects, employing appropriate methodology, in order to deal adequately with this intriguing and compelling aspect of narcolepsy. © 2010 Springer-Verlag New York.