The development of a health-related quality-of-life instrument for young people with narcolepsy: NARQoL-21.

ABSTRACT:

Background

Narcolepsy is a lifelong sleep disorder with a prevalence of between 0.03% and 0.06% and onset at around puberty. It is associated with psychiatric comorbidities and cognitive difficulties. No valid and reliable condition-specific health-related quality-of-life (HrQoL) instrument has been developed for this population.

Methods

A questionnaire based on four mixed-gender age-defined focus group discussions and a patient panel analysis was administered to young people with narcolepsy and a control group. External reliability was measured by a test-retest procedure and internal reliability was measured using Cronbach's alpha. Convergent validity with the KIDSCREEN-10 index was assessed using with intraclass correlation coefficients (ICC) and receiver operating charact

SUBMITTER: Chaplin JE 

PROVIDER: S-EPMC5496267 | biostudies-literature | 2017 Jul

REPOSITORIES: biostudies-literature