Living with narcolepsy as a result of vaccination against the swine-flu - quality-of-life and the need of support among children and adolescents and their families

Approximately 200 Swedish children and adolescents acquired narcolepsy following vaccination with Pandemrix^®. The purpose of this project is to develop knowledge about their and their families’ experiences of living with narcolepsy, including quality-of-life, impact on daily living and need for support. All affected children and adolescents will be invited to respond to standardized instruments and 25 children and their families will be followed with repeated interviews. The results that also will be analysed with a health-economic perspective will generate knowledge that can help in developing support for the affected children, adolescents and their families.

The project is managed by Assoc. Professors Karin Blomberg and Mats Eriksson.