Narcolepsy and how it affects lives at school, work and home
Research type
Research Study
Full title
Survey of adults with type I narcolepsy on how their condition has affected career opportunities, education, quality of life and independent living.
IRAS ID
291092
Contact name
Tim Quinnell
Contact email
Sponsor organisation
Royal Papworth Hospital NHS Foundation Trust
Duration of Study in the UK
0 years, 8 months, days
Research summary
Narcolepsy and how it affects education, employment and independent living. We will be undertaking an anonymised survey of adult patients with type 1 narcolepsy, a condition that causes excessive daytime sleepiness and disturbed sleep/wake cycle. Patients also suffer cataplectic attacks in response to strong emotion. The condition is life long and incurable, and management is based on symptoms control with medication and behavioural strategies. We know little about how type 1 narcolepsy affects UK patients’ educational experience, job opportunities and whether patients are able to manage independently at home or when travelling. The survey will shed light on these areas that are often overlooked when reviewing patients in clinic. This will help clinicians understand the holistic needs of patients with type 1 narcolepsy and highlight issues that may need to be addressed in clinic consultations to provide effective treatment enabling patients to maximise their quality of life and social opportunities. \n\nThe study will recruit adult patients with type I narcolepsy that are under the care of the sleep centre at the Royal Papworth Hospital NHS Foundation Trust in Cambridge. Patients will be informed at routine clinic appointments or contacted by phone about the survey and those that express an interest will be posted out the survey pack. We hope to complete the study within 10 months.
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
21/EE/0076
Date of REC Opinion
27 Mar 2021
REC opinion
Unfavourable Opinion