PARADISE

Psychosocial fActors Relevant to BrAin DISorders in Europe

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 Obiettivo del progetto (Objective)

'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. These disorders are dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson’s Disease, schizophrenia, stroke and substance use disorders. PARADISE will pave the way to future investigations that more meaningfully track the trajectories of psychosocial difficulties of brain disorders.'

Introduzione (Teaser)

New disability assessment for brain disorders

Descrizione progetto (Article)

Currently, the extent of psychosocial difficulties experienced by patients is vastly underestimated as pertinent data is lacking. To address this, the EC-funded 'Psychosocial factors relevant to brain disorders in Europe' (http://paradiseproject.eu/ (PARADISE)) project was initiated.

Composed of eight European countries, this consortium adopted a horizontal epidemiological approach to gather data on commonly experienced psychosocial difficulties across different brain disorders. Nine representative and heterogeneous brain conditions were selected for testing: dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson's disease, schizophrenia, stroke and substance dependency.

The researchers analysed systematic literature reviews, patient focus groups and interviews, feedback from clinical experts and 12 databases to identify commonly experienced psychosocial difficulties. The resulting data was used to draft a data collection tool called the Paradise Protocol. This tool is user-friendly with questions that are easily understood for accurate documentation of psychosocial difficulties.

To implement the PARADISE protocol, training courses were held for the interviewers at selected centres to produce harmonised data on brain disorders. This also aided the construction of a metric for measuring psychosocial difficulties though comparisons between persons and groups of persons with different brain disorders. The resulting Paradise-24 protocol contains psychosocial difficulty profiles, 11 determinants of psychosocial difficulty and a summary score.

The project outcomes were presented at a meeting to key stakeholders in brain disorder research and policy development and published in four peer-reviewed journals. Additionally, project members participated in over 60 national and international conferences.

The Paradise Protocol will provide scientific evidence to direct Europe's future strategy on mental health disorders through reliable and comparable disability information. Interventions will shift from the purely medical to include relevant health and social interventions. This should improve the quality of care provided to individuals with such disorders and considerable enhance their quality of life.