Abstract
The project PARADISE (Psychosocial fActors Relevant to BrAin DISorders in Europe) funded by the European Community (Grant Agreement 652 no. HEALTH-F2-2009-241572) is being carried out in terms of the theoretical conceptualization of “horizontal epidemiology”, which argues that the psychosocial difficulties (PSDs) people have to deal with when they have a brain disorder - either psychiatric or neurological - and the determinants of those PSDs are common across brain disorders. To develop and test an innovative approach to collect clinical data on the PSDs based on the horizontal epidemiology. 1) To determine the PSDs and determinants commonly relevant across brain disorders. 2) To create a data collection protocol to describe and assess PSDs and their determinants across brain disorders. In the first phase, a pilot data collection protocol was developed based on literature reviews and focus groups in 9 brain disorders (dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson's Disease, schizophrenia, stroke and substance use disorders) as well as data analyses of surveys and expert consultations. In the current second phase, the protocol is being tested in a sample of 700 patients across Europe. The pilot data collection protocol contains 63 PSDs and 64 determinants, which have been identified as common across brain disorders. If we are right about the hypothesis of horizontal epidemiology in brain disorders, this way of collecting information would have profound consequences for how we organize and deliver services to people with brain disorders across Europe, improving their lives and life opportunities.
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