New disability assessment for brain disorders
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' (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.
Keywords
Mental health, disorders, neuropsychiatric, psychosocial difficulties, epidemiological, protocol, metric, harmonised, policy, interventions