Psychosocial fActors Relevant to BrAin DISorders in Europe (PARADISE)
- Neurodegenerative disease in general
The overall prevalence of brain disorders both neurological and psychiatric is very high in Europe. Although it is well known that the burden and costs of these disorders are high, there is evidence that the overall, personal, social and economic costs of brain disorders have been underestimated because of the lack of valid and reliable information regarding the full range of psychosocial difficulties that actually shape the lived experience of persons with these disorders and affect their quality of life.
Current European data on psychosocial difficulties are derived from the diagnostic criteria of each disorder and so take the form of narrow information silos that are neither comprehensive nor comparable across disorders. Distinct information silos means that treatment planning, treatment evaluation and outcome assessment ignores commonalities of psychosocial consequences across disorders, undermining treatment efficiency and effectiveness, and ultimately increasing the costs of health and social care provision. The coordination action called PARADISE has the general objective of coordinating the development of a comprehensive and cross-cutting or horizontal epidemiology of psychosocial difficulties associated with brain disorders.
Since a horizontal epidemiology accounts for the psychosocial difficulties that are actually experienced by people with brain disorders, independently of the brain disorder associated with them, it concentrates on what is more relevant to the lives of people with brain disorders. This leads to more effective intervention planning and management, and therefore to improved quality of life along the continuum of care, in the community, and across the life span. PARADISE coordinates the existing expertise in partners from eight European countries in relation to research literature, data documentation and analysis strategies for a representative range of brain disorders.