Narcolepsy is a serious and debilitating condition involving persistent and excessive sleepiness that affects 1 in 2000 Americans and 3 million people worldwide. Although wake-promoting pharmacotherapy can reduce sleepiness there is no cure and people with narcolepsy experience significantly poor health-related quality of life, particularly in the domains of mental and social health. New preliminary data reveals that current practices within the traditional health care system are not adequate for addressing the psychosocial needs of people with narcolepsy. Therefore, the overarching goal of this research is to test the effectiveness of a mindfulness-based intervention (MBI) for improving health-related quality of life as a complementary practice to standard care for narcolepsy. This project builds upon our preliminary work by conducting a feasibility trial to determine the optimal parameters for adapting and delivering MBI to people with narcolepsy.
The specific aims are to: 1) Determine the feasibility and acceptability of MBI delivered using videoconferencing for the purpose of improving psychosocial functioning in people with narcolepsy and 2) Determine the feasibility of recruitment and assessment methods for delivering MBI using videoconferencing. We plan to carry out these aims in two phases. Phase I features the completion of the study protocol and training of MBI providers to work with narcolepsy patients. Phase II features a feasibility trial in which 60 adults with narcolepsy will be randomized to receive either a 4-week (short), 8-week (standard), or 12-week (extended) MBI. Each MBI will be similar in content, which includes mindfulness practices and group discussions with adaptations for working with narcolepsy symptoms. All MBIs will be delivered in small groups using a live videoconferencing platform to enhance accessibility. If the findings of this project support the feasibility of further testing, the next project would be aimed at enhancing rigor and reproducibility (e.g., designing appropriate control, refining outcome measures and eligibility criteria) in preparation for a large-scale pragmatic trial. We have a team armed with experience in mindfulness, sleep disorders, and treatment development, and a rich environment with the infrastructure and resources to carry out this project. The overall significance of this research is to develop a scalable mind-body intervention that addresses a major research gap on improving psychosocial functioning in people with narcolepsy.

Public Health Relevance

The purpose of this research project is to gather data on the feasibility and acceptability of mind-body interventions using mindfulness meditation to improve the health-related quality of life for people with narcolepsy. The findings will help prepare for a future study that tests the effectiveness of using mindfulness as a complementary approach with standard care.

Agency
National Institute of Health (NIH)
Institute
National Center for Complementary & Alternative Medicine (NCCAM)
Type
Planning Grant (R34)
Project #
1R34AT009551-01A1
Application #
9827914
Study Section
Special Emphasis Panel (ZAT1)
Program Officer
White, Della
Project Start
2019-09-01
Project End
2022-08-31
Budget Start
2019-09-01
Budget End
2020-08-31
Support Year
1
Fiscal Year
2019
Total Cost
Indirect Cost
Name
Northwestern University at Chicago
Department
Neurology
Type
Schools of Medicine
DUNS #
005436803
City
Chicago
State
IL
Country
United States
Zip Code
60611