Sleep & Wake Disorders
The Burden of Sleep/Wake Disorders:
Excessive Daytime Sleepiness and Insomnia Project
EAN Working Group Leaders: Prof. Claudio Bassetti; Prof. Stefan Seidel; Prof. Ulf Kallweit, Prof. Maurizio Leone
The European Academy of Neurology (EAN) is proposing a new study on the topic of sleep & wake disorders. Its initial idea was inspired on EBC´s Value of Treatment projects. Currently, this research intends not only to systematically assess the scientific literature on this topic but also to explore the socio-economic consequences of insomnia and daytime sleepiness taking into consideration a patient´s centred perspective.
Sleep and wake disorders are prevalent phenomena that significantly affect individuals´ health, their social relationships, educational and professional performance, and quality of life. Although common in the general population, they tend to be regularly underdiagnosed; treatment is frequently not evidence-based; self-treatment is an issue. Moreover, sleep-wake disorders might constitute the first signs of a latent brain disorder.
In recent times, the importance of adequate sleep has become increasingly appreciated. Two well recognized syndromes include Insomnia and Excessive Daytime Sleepiness. Although the consequences on the quality of life of these conditions has been to some extent acknowledged, an understanding of the economic impact that an adequate therapeutic management can have and research data coming from a patient centred perspective is practically non-existent.
Objectives.
- To describe insomnia and daytime sleepiness disorders´ taking into consideration their socio-economic burden as reported in current scientific publications.
- To describe insomnia and daytime sleepiness disorders´ impact on the quality of life as referred by patients´ personal experience.
- To compare insomnia and daytime sleepiness disorders´ impact on the quality of life as referred by patients from different macro-European regions.
- To calculate direct and indirect economic costs attributable to insomnia and daytime sleepiness disorders in at least two European countries.
- To provide policy recommendations for insomnia and daytime sleepiness disorders.
Breakdown by work package
Work-Package I (12 months)
Literature Review
| Deliverables | Systematic Literature review scientific publication |
| Project Description | Systematic review of the scientific literature on excessive daytime sleepiness and insomnia considering the impact of these disorders on the quality of life of the patients and their families, as well as the socio-economic impact produced at a bigger societal scale. Different PICOs will be identified and each potential scientific paper will be assessed in order to verify whether they fulfil the necessary requirements. Data will be extracted and analysed. Results will be published in scientific journals. |
| Working Group | Luca Vignatelli, Elisabetta Pupillo, Stefan Seidel, Ulf Kallweit. |
Work-Package II (27 months)
a.) Pilot survey in two European countries (20 months).
b.) Survey in two additional European countries (20 months; not a pre-requisite for Package III)
| Deliverables | a.) Scientific publication |
| Project Description | On an initial stage of the current project a), a pilot study will be carried out to assess the feasibility and identify all main challenges. At least ten GPs from two European countries will be contacted and invited to participate in the study. The GPs will introduce the research project to the patients that assist to their medical practice. Patients that show interest and are willing to participate, will sign the informed consent and respond to a series of scales and questionnaires. Patients that are identified as presenting one of the two target sleep disorders will be followed for 12 months and fill in a diary and scales on a more regular basis. An electronic application will be used by which the participants will complete the requested data. |
Work Package III (7 months)
Cost of illness study
| Deliverables | Scientific publication with descriptive and comparative results |
| Project Description | Taking into account the results derived from WP I and II an economic analysis of the two target disorders will be performed |
Work Package IV (7 months)
Strategies for improving the treatment of patients with sleep disorders
Final Report
| Deliverables | White paper on Insomnia and excessive sleepiness disorders management |
| Project Description | Considering the results derived from WPI, II and III, all partner societies will contribute to the drafting of a final document with a synthesis of the main results and recommendations for an effective prevention, recognition and treatment of these disorders. |
Official supporters:
Partners:
| PROJECT PARTNERS | REPRESENTATIVE |
| European Federation of Neurological Associations (EFNA) | Mrs. Joke Jaarsma |
| European Psychiatric Association (EPA) | Prof. Andrea Fiorillo |
| European Paediatric Neurology Society (EPNS) | Prof. Oliviero Bruni |
| European Sleep Research Society (ESRS) | Prof. Dirk Pevernagie |
| Alzheimer Europe (AE) | Prof. Iva Holmerová |
| Independent Expert on pulmonology / Scientific Communication | Prof. Winfried Randerath |
On 31 March 2022 the cooperation agreement was finalized, and signed by all the partners societies.
Our sincere thanks to EPA, ESRS, EPNS, EFNA and Alzheimer Europe for officially joining this important scientific project!
