Mind-Body Approach to Improve Health-Related Quality of Life for People with Narcolepsy

Project: Research project

Description

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 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.
StatusActive
Effective start/end date9/1/198/31/22

Funding

  • National Center for Complementary and Integrative Health (1R34AT009551-01A1)

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Narcolepsy
Mindfulness
Quality of Life
Videoconferencing
Pragmatic Clinical Trials
Research
Mental Health
Outcome Assessment (Health Care)
Delivery of Health Care