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

Alarcos Cieza, Marta Anczewska, Jose Luis Ayuso-Mateos, Mary Baker, Jerome Bickenbach, Somnath Chatterji, Sally Hartley, Matilde Leonardi, Tuuli Pitkänen, Michaela Coenen, Heinrich Gall, Barbara Kollerits, Carla Sabariego, Maria Cabello, Blanca Mellor, Jordi Vigil, Milda Cerniauskaite, Venusia Covelli, Ambra Giovannetti, Rui QuintasAlberto Raggi, Silvia Schiavolin, Carolina Ballert, Mirjam Brach, Miriam Lückenkemper, Alastair Benbow, Tadeusz Hawrot, Katarzyna Charzyńska, Anna Chrostek, Piotr ͆witaj, Joanna Roszczyńska-Michta, Justyna Waszkiewicz, Carla Finocchiaro, Serena Cogoni, Antti Holopainen, Kirsi Jokela, Teemu Kaskela, Jonna Levola, Jouni Tourunen

Research output: Contribution to journalArticle

Abstract

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 study including a convenience sample of persons with one of the nine brain disorders. PSDs endorsed by at least 25% of patients with a brain disorder were considered associated with the disorder. PSD were considered common across disorders if associated to 5 out of the 9 brain disorders and if among the 5 both neurological and psychiatric conditions were represented. Setting The data collection protocol with 64 PSDs and 20 determinants was used to collect data from a convenience sample of 722 persons in four specialized health care facilities in Europe. Results 57 of the PSDs and 16 of the determinants included in the protocol were found to be experienced across brain disorders. Conclusion This is the first evidence that supports the hypothesis of horizontal epidemiology in brain disorders. This result challenges the brain disorder-specific or vertical approach in which clinical and epidemiological research about psychosocial difficulties experienced in daily life is commonly carried in neurology and psychiatry and the way in which the corresponding health care delivery is practiced in many countries of the world.

Original languageEnglish
Article numbere0136271
JournalPLoS One
Volume10
Issue number9
DOIs
Publication statusPublished - Sep 9 2015

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Epidemiology
Brain Diseases
epidemiology
Brain
brain
Psychiatry
Health care
health services
migraine
Delivery of Health Care
behavior disorders
nervous system diseases
dementia
epilepsy
Parkinson disease
Health Facilities
sclerosis
Neurology
Nervous System Diseases
sleep

ASJC Scopus subject areas

  • Agricultural and Biological Sciences(all)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Medicine(all)

Cite this

Cieza, A., Anczewska, M., Ayuso-Mateos, J. L., Baker, M., Bickenbach, J., Chatterji, S., ... Tourunen, J. (2015). Understanding the impact of brain disorders: Towards a 'horizontal epidemiology' of psychosocial difficulties and their determinants. PLoS One, 10(9), [e0136271]. https://doi.org/10.1371/journal.pone.0136271

Understanding the impact of brain disorders : Towards a 'horizontal epidemiology' of psychosocial difficulties and their determinants. / Cieza, Alarcos; Anczewska, Marta; Ayuso-Mateos, Jose Luis; Baker, Mary; Bickenbach, Jerome; Chatterji, Somnath; Hartley, Sally; Leonardi, Matilde; Pitkänen, Tuuli; Coenen, Michaela; Gall, Heinrich; Kollerits, Barbara; Sabariego, Carla; Cabello, Maria; Mellor, Blanca; Vigil, Jordi; Cerniauskaite, Milda; Covelli, Venusia; Giovannetti, Ambra; Quintas, Rui; Raggi, Alberto; Schiavolin, Silvia; Ballert, Carolina; Brach, Mirjam; Lückenkemper, Miriam; Benbow, Alastair; Hawrot, Tadeusz; Charzyńska, Katarzyna; Chrostek, Anna; ͆witaj, Piotr; Roszczyńska-Michta, Joanna; Waszkiewicz, Justyna; Finocchiaro, Carla; Cogoni, Serena; Holopainen, Antti; Jokela, Kirsi; Kaskela, Teemu; Levola, Jonna; Tourunen, Jouni.

In: PLoS One, Vol. 10, No. 9, e0136271, 09.09.2015.

Research output: Contribution to journalArticle

Cieza, A, Anczewska, M, Ayuso-Mateos, JL, Baker, M, Bickenbach, J, Chatterji, S, Hartley, S, Leonardi, M, Pitkänen, T, Coenen, M, Gall, H, Kollerits, B, Sabariego, C, Cabello, M, Mellor, B, Vigil, J, Cerniauskaite, M, Covelli, V, Giovannetti, A, Quintas, R, Raggi, A, Schiavolin, S, Ballert, C, Brach, M, Lückenkemper, M, Benbow, A, Hawrot, T, Charzyńska, K, Chrostek, A, ͆witaj, P, Roszczyńska-Michta, J, Waszkiewicz, J, Finocchiaro, C, Cogoni, S, Holopainen, A, Jokela, K, Kaskela, T, Levola, J & Tourunen, J 2015, 'Understanding the impact of brain disorders: Towards a 'horizontal epidemiology' of psychosocial difficulties and their determinants', PLoS One, vol. 10, no. 9, e0136271. https://doi.org/10.1371/journal.pone.0136271
Cieza, Alarcos ; Anczewska, Marta ; Ayuso-Mateos, Jose Luis ; Baker, Mary ; Bickenbach, Jerome ; Chatterji, Somnath ; Hartley, Sally ; Leonardi, Matilde ; Pitkänen, Tuuli ; Coenen, Michaela ; Gall, Heinrich ; Kollerits, Barbara ; Sabariego, Carla ; Cabello, Maria ; Mellor, Blanca ; Vigil, Jordi ; Cerniauskaite, Milda ; Covelli, Venusia ; Giovannetti, Ambra ; Quintas, Rui ; Raggi, Alberto ; Schiavolin, Silvia ; Ballert, Carolina ; Brach, Mirjam ; Lückenkemper, Miriam ; Benbow, Alastair ; Hawrot, Tadeusz ; Charzyńska, Katarzyna ; Chrostek, Anna ; ͆witaj, Piotr ; Roszczyńska-Michta, Joanna ; Waszkiewicz, Justyna ; Finocchiaro, Carla ; Cogoni, Serena ; Holopainen, Antti ; Jokela, Kirsi ; Kaskela, Teemu ; Levola, Jonna ; Tourunen, Jouni. / Understanding the impact of brain disorders : Towards a 'horizontal epidemiology' of psychosocial difficulties and their determinants. In: PLoS One. 2015 ; Vol. 10, No. 9.
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abstract = "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 study including a convenience sample of persons with one of the nine brain disorders. PSDs endorsed by at least 25{\%} of patients with a brain disorder were considered associated with the disorder. PSD were considered common across disorders if associated to 5 out of the 9 brain disorders and if among the 5 both neurological and psychiatric conditions were represented. Setting The data collection protocol with 64 PSDs and 20 determinants was used to collect data from a convenience sample of 722 persons in four specialized health care facilities in Europe. Results 57 of the PSDs and 16 of the determinants included in the protocol were found to be experienced across brain disorders. Conclusion This is the first evidence that supports the hypothesis of horizontal epidemiology in brain disorders. This result challenges the brain disorder-specific or vertical approach in which clinical and epidemiological research about psychosocial difficulties experienced in daily life is commonly carried in neurology and psychiatry and the way in which the corresponding health care delivery is practiced in many countries of the world.",
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AU - Cieza, Alarcos

AU - Anczewska, Marta

AU - Ayuso-Mateos, Jose Luis

AU - Baker, Mary

AU - Bickenbach, Jerome

AU - Chatterji, Somnath

AU - Hartley, Sally

AU - Leonardi, Matilde

AU - Pitkänen, Tuuli

AU - Coenen, Michaela

AU - Gall, Heinrich

AU - Kollerits, Barbara

AU - Sabariego, Carla

AU - Cabello, Maria

AU - Mellor, Blanca

AU - Vigil, Jordi

AU - Cerniauskaite, Milda

AU - Covelli, Venusia

AU - Giovannetti, Ambra

AU - Quintas, Rui

AU - Raggi, Alberto

AU - Schiavolin, Silvia

AU - Ballert, Carolina

AU - Brach, Mirjam

AU - Lückenkemper, Miriam

AU - Benbow, Alastair

AU - Hawrot, Tadeusz

AU - Charzyńska, Katarzyna

AU - Chrostek, Anna

AU - ͆witaj, Piotr

AU - Roszczyńska-Michta, Joanna

AU - Waszkiewicz, Justyna

AU - Finocchiaro, Carla

AU - Cogoni, Serena

AU - Holopainen, Antti

AU - Jokela, Kirsi

AU - Kaskela, Teemu

AU - Levola, Jonna

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