Development and Validation of Pediatric Narcolepsy Patient Reported Outcomes Scale (PN-PROS) 

2018 Strategic Research Grant 

Kiran Maski, MD
Boston Children’s Hospital

Key Project Outcome

Thanks to grant support from the American Academy of Sleep Medicine (AASM) Foundation, we developed and validated a new tool to assess the symptom burden and outcomes of children and adolescents with narcolepsy. This tool, called the Pediatric Narcolepsy Patient-Reported Outcomes (PN-PROs), will make a significant impact in both clinical and research settings. It allows us to better understand and evaluate the experiences of children and adolescents with narcolepsy, using language and scenarios that are relatable to them. The PN-PROs also takes into account important aspects such as cognitive function, academic performance, and social interactions, which are often overlooked in existing surveys. The AASM Foundation‘s support has been invaluable in conducting rigorous testing and validation of the PN-PROs across multiple sites in North America. We are confident that this tool will enhance our ability to assess disease control and overall well-being in pediatric narcolepsy. 

Journal Articles

FRONTIERS IN SLEEP

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