Understanding the impact of brain disorders: Towards a 'horizontal epidemiology' of psychosocial difficulties and their determinants

Objective To test the hypothesis of ‘horizontal epidemiology’, i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders. Study Design A multi-method study involving systematic literature reviews, content analysis of patientreported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson’s disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectional Objective To test the hypothesis of ‘horizontal epidemiology’, i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders. Study Design A multi-method study involving systematic literature reviews, content analysis of patientreported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson’s disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectionalThe PARADISE project is supported by the Coordination Theme 1 (Health) of the European Community’s FP7, Grant Agreement No. HEALTHF2- 2009-241572

Psychosocial difficulties from the perspective of persons with neuropsychiatric disorders

Purpose: The objective of this study is to determine whether persons with neuropsychiatric disorders experience a common set of psychosocial difficulties using qualitative data from focus groups and individual interviews. Method: The study was performed in five European countries (Finland, Italy, Germany, Poland and Spain) using the focus groups and individual interviews with persons with nine neuropsychiatric disorders (dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinsons disease, schizophrenia, stroke and substance dependence). Digitally recorded sessions were analysed using a step-by-step qualitative and quantitative methodology resulting in the compilation of a common set of psychosocial difficulties using the International Classification of Functioning, Disability and Health (ICF) as a framework. Results: Sixty-seven persons participated in the study. Most persons with neuropsychiatric disorders experience difficulties in emotional functions, sleeping, carrying out daily routine, working and interpersonal relationships in common. Sixteen out of 33 psychosocial difficulties made up the common set. This set includes mental functions, pain and issues addressing activities and participation and provides first evidence for the hypothesis of horizontal epidemiology of psychosocial difficulties in neuropsychiatric disorders. Conclusions: This study provides information about psychosocial difficulties that should be covered in the treatment and rehabilitation of persons with neuropsychiatric disorders regardless of clinical diagnoses. Implications for Rehabilitation: Emotional problems, work and sleep problems should be addressed in all the treatments of neuropsychiatric disorders regardless of their specific diagnosis, etiology and severity. Personality issues should be targeted in the treatment for neurological disorders, whereas communication skill training may also be useful for mental disorders. The effects of medication and social environment on patients daily life should be considered in all the neuropsychiatric conditions

PARADISE 24: a measure to assess the impact of brain disorders on people's lives

Objective: To construct a metric of the impact of brain disorders on people's lives, based on the psychosocial difficulties (PSDs) that are experienced in common across brain disorders. Study Design: Psychometric study using data from a cross-sectional study with a convenience sample of 722 persons with 9 different brain disorders interviewed in four European countries: Italy, Poland, Spain and Finland. Questions addressing 64 PSDs were first reduced based on statistical considerations, patient's perspective and clinical expertise. Rasch analyses for polytomous data were also applied. Setting: In and outpatient settings. Results: A valid and reliable metric with 24 items was created. The infit of all questions ranged between 0.7 and 1.3. There were no disordered thresholds. The targeting between item thresholds and persons' abilities was good and the person-separation index was 0.92. Persons' abilities were linearly transformed into a more intuitive scale ranging from zero (no PSDs) to 100 (extreme PSDs). Conclusion: The metric, called PARADISE 24, is based on the hypothesis of horizontal epidemiology, which affirms that people with brain disorders commonly experience PSDs. This metric is a useful tool to carry out cardinal comparisons over time of the magnitude of the psychosocial impact of brain disorders and between persons and groups in clinical practice and research