Development of the pediatric narcolepsy patient-reported outcomes scale (PN-PROs).

ABSTRACT:

Background

Pediatric narcolepsy is a chronic neurological disorder that impacts the health and overall wellbeing of children and adolescents with the disease. Meaningful and regular assessment of symptom frequency and severity is important for the long-term management of narcolepsy and for optimizing quality of life. However, there is currently no patient-reported outcomes (PROs) measure developed from both patient and expert input that is designed specifically to assess the impact of pediatric narcolepsy on daily life and overall disease burden.

Methods

We conducted a qualitative mixed-methods study to develop a novel patient-reported outcomes measure for pediatric narcolepsy patients. We created and refined a conceptual framework through literature review, semi-structured

SUBMITTER: Wang GY 

PROVIDER: S-EPMC12713932 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature