Narcolepsy is a rare condition that causes people to fall asleep at inappropriate times, this can cause problems in coping with daily life. There is no cure for narcolepsy, however there are a number of medications that can help with the symptoms of narcolepsy, such as daytime sleepiness. Currently, clinical guidelines on how to diagnose and treat patients with narcolepsy are limited. There are also gaps in our knowledge about the number of people in the UK who live with narcolepsy, their characteristics, what medical care and medications they receive and how they use healthcare services as well as the societal and economic impact of narcolepsy as a whole.
This study will use the data collected in CPRD to determine the number of people who have narcolepsy, describe their characteristics (such as their age, sex, socioeconomic status and other illnesses that they may have) as well as understand the type of medication that they are given and how the medications given change over time. Additionally, this study will look at how people with narcolepsy use healthcare services, are admitted to hospitals with accidents and/or injuries and the societal and economic costs compared to people of similar age and sex who do not have narcolepsy.
The results of this study will fill in the gaps in our knowledge about the number of people who suffer from narcolepsy in England and Wales, their need for healthcare services and treatment and the societal impact of narcolepsy. In addition to determining what treatment and care patients with narcolepsy receive and how they align with clinical practice guidelines, the results will help to improve the planning of interventions, services, and allocation of resources for this patient group.
The aim of this study is to quantify the incidence and prevalence of narcolepsy in the UK as well as understand the patient characteristics, treatment pathways (before and after diagnosis), treatment patterns and associated healthcare resource use (HCRU) of individuals with narcolepsy. This study will be an observational retrospective matched cohort study. It will be primarily descriptive in nature though HCRU rates and accident and injury rates in individuals with narcolepsy will be compared to a matched cohort of individuals without narcolepsy. Individuals will be frequency matched on the basis of age and sex. HES Admitted Patient Care and A&E emergency linked datasets will be used to assess the hospitalisations and emergency admissions rates in the context of a patients clinical journey and their HCRU.
Incidence and period prevalence of narcolepsy will be calculated for the years 2000-2019 and will be stratified by age, sex and year and later extrapolated to a standardised European population using the direct standardisation method. Descriptive statistics will be used to summarise the patient characteristics, treatments patterns and a patients clinical journey through the healthcare system for the years 2014-2019. Exploratory data analysis with visualisation techniques (e.g. frequent pattern analytics, flow visualisation) will be used to describe common patterns in patients sequence of treatment and clinical interventions in the years 2014-2019. Annualised HCRU and emergency accident and injury rates will be calculated and modelled by time using Poisson regression analyses for the years 2014-2019.
Descriptive outcomes (key variables): incidence; prevalence; patient characteristics (age, sex, region, socioeconomic status and comorbidities); treatment patterns; treatment pathways (referrals); number of sleep tests and number of sickness certificates.
Comparative outcomes: all-cause, narcolepsy-related GP visits; all-cause, psychiatric, physiotherapy and narcolepsy-related referrals; all-cause, narcolepsy-related hospitalisations; all-cause, psychiatric and narcolepsy-related emergency admissions; emergency accident and injury admissions.
Nawab Qizilbash - Chief Investigator - OXON Epidemiology - Spain
Bélène Podmore - Corresponding Applicant - OXON Epidemiology - Spain
Andrea Falco - Collaborator - OXON Epidemiology - Spain
Ignacio Mendez - Collaborator - OXON Epidemiology - Spain
Kirsty Andresen - Collaborator - OXON Epidemiology - Spain
Lorena Baquero - Collaborator - OXON Epidemiology - Spain
MIGUEL DESCALZO - Collaborator - OXON Epidemiology - Spain
Raúl Sánchez - Collaborator - OXON Epidemiology - Spain
Rosie Barnett - Collaborator - OXON Epidemiology - Spain
Shreya Dave - Collaborator - Takeda Development Center Americas, Inc.
Shreya Dave - Chief Investigator - Takeda Development Center Americas, Inc.
HES Accident and Emergency;HES Admitted Patient Care;Patient Level Index of Multiple Deprivation