The Italian dementia with Lewy bodies study group (DLB-SINdem): toward a standardization of clinical procedures and multicenter cohort studies design

L. Bonanni, A. Cagnin, F. Agosta, C. Babiloni, B. Borroni, M. Bozzali, A. C. Bruni, M. Filippi, D. Galimberti, R. Monastero, C. Muscio, L. Parnetti, D. Perani, L. Serra, V. Silani, P. Tiraboschi, A. Padovani, A. Alberici, M. Alberoni, S. AmiciI. Appollonio, M. G. Arena, A. Arighi, S. Avanzi, C. F. Bagella, F. Baglio, F. Barocco, N. Belardinelli, U. Bonuccelli, G. Bottini, R. Bruno Bossio, G. Bruno, D. Buccomino, G. Cacchiò, E. Calabrese, C. Cerami, A. Costa, M. S. Cotelli, L. Cravello, E. Farina, M. Franceschi, G. G. Fumagalli, G. Magnani, R. Nemni, R. Perri, F. L. Saibene, E. Scarpini, D. Seripa, E. Sinforiani, M. A. Volontè, On behalf of DLB-SINdem study group, Istituto Superiore di Sanità

Research output: Contribution to journalArticle

Abstract

Dementia with Lewy bodies (DLB) causes elevated outlays for the National Health Systems due to high institutionalization rate and patients’ reduced quality of life and high mortality. Furthermore, DLB is often misdiagnosed as Alzheimer’s disease. These data motivate harmonized multicenter longitudinal cohort studies to improve clinical management and therapy monitoring. The Italian DLB study group of the Italian Neurological Society for dementia (SINdem) developed and emailed a semi-structured questionnaire to 572 national dementia centers (from primary to tertiary) to prepare an Italian large longitudinal cohort. The questionnaire surveyed: (1) prevalence and incidence of DLB; (2) clinical assessment; (3) relevance and availability of diagnostic tools; (4) pharmacological management of cognitive, motor, and behavioural disturbances; (5) causes of hospitalization, with specific focus on delirium and its treatment. Overall, 135 centers (23.6 %) contributed to the survey. Overall, 5624 patients with DLB are currently followed by the 135 centers in a year (2042 of them are new patients). The percentage of DLB patients was lower (27 ± 8 %) than that of Alzheimer’s disease and frontotemporal dementia (56 ± 27 %) patients. The majority of the centers (91 %) considered the clinical and neuropsychological assessments as the most relevant procedure for a DLB diagnosis. Nonetheless, most of the centers has availability of magnetic resonance imaging (MRI; 95 %), electroencephalography (EEG; 93 %), and FP-CIT single photon emission-computerized tomography (SPECT; 75 %) scan for clinical applications. It will be, therefore, possible to recruit a large harmonized Italian cohort of DLB patients for future cross-sectional and longitudinal multicenter studies.

Original languageEnglish
Pages (from-to)1-9
Number of pages9
JournalNeurological Sciences
DOIs
Publication statusAccepted/In press - Sep 13 2016

Fingerprint

Lewy Body Disease
Multicenter Studies
Cohort Studies
Single-Photon Emission-Computed Tomography
Longitudinal Studies
Dementia
Electroencephalography
Alzheimer Disease
Frontotemporal Dementia
Institutionalization
Delirium
Diagnostic Errors
Hospitalization
Quality of Life
Magnetic Resonance Imaging
Pharmacology
Mortality
Incidence
Health
Therapeutics

Keywords

  • Dementia with Lewy bodies
  • Standardization of diagnostic procedures
  • Survey

ASJC Scopus subject areas

  • Dermatology
  • Clinical Neurology
  • Psychiatry and Mental health

Cite this

The Italian dementia with Lewy bodies study group (DLB-SINdem) : toward a standardization of clinical procedures and multicenter cohort studies design. / Bonanni, L.; Cagnin, A.; Agosta, F.; Babiloni, C.; Borroni, B.; Bozzali, M.; Bruni, A. C.; Filippi, M.; Galimberti, D.; Monastero, R.; Muscio, C.; Parnetti, L.; Perani, D.; Serra, L.; Silani, V.; Tiraboschi, P.; Padovani, A.; Alberici, A.; Alberoni, M.; Amici, S.; Appollonio, I.; Arena, M. G.; Arighi, A.; Avanzi, S.; Bagella, C. F.; Baglio, F.; Barocco, F.; Belardinelli, N.; Bonuccelli, U.; Bottini, G.; Bruno Bossio, R.; Bruno, G.; Buccomino, D.; Cacchiò, G.; Calabrese, E.; Cerami, C.; Costa, A.; Cotelli, M. S.; Cravello, L.; Farina, E.; Franceschi, M.; Fumagalli, G. G.; Magnani, G.; Nemni, R.; Perri, R.; Saibene, F. L.; Scarpini, E.; Seripa, D.; Sinforiani, E.; Volontè, M. A.; On behalf of DLB-SINdem study group; Istituto Superiore di Sanità.

In: Neurological Sciences, 13.09.2016, p. 1-9.

Research output: Contribution to journalArticle

Bonanni, L, Cagnin, A, Agosta, F, Babiloni, C, Borroni, B, Bozzali, M, Bruni, AC, Filippi, M, Galimberti, D, Monastero, R, Muscio, C, Parnetti, L, Perani, D, Serra, L, Silani, V, Tiraboschi, P, Padovani, A, Alberici, A, Alberoni, M, Amici, S, Appollonio, I, Arena, MG, Arighi, A, Avanzi, S, Bagella, CF, Baglio, F, Barocco, F, Belardinelli, N, Bonuccelli, U, Bottini, G, Bruno Bossio, R, Bruno, G, Buccomino, D, Cacchiò, G, Calabrese, E, Cerami, C, Costa, A, Cotelli, MS, Cravello, L, Farina, E, Franceschi, M, Fumagalli, GG, Magnani, G, Nemni, R, Perri, R, Saibene, FL, Scarpini, E, Seripa, D, Sinforiani, E, Volontè, MA, On behalf of DLB-SINdem study group & Istituto Superiore di Sanità 2016, 'The Italian dementia with Lewy bodies study group (DLB-SINdem): toward a standardization of clinical procedures and multicenter cohort studies design', Neurological Sciences, pp. 1-9. https://doi.org/10.1007/s10072-016-2713-8
Bonanni, L. ; Cagnin, A. ; Agosta, F. ; Babiloni, C. ; Borroni, B. ; Bozzali, M. ; Bruni, A. C. ; Filippi, M. ; Galimberti, D. ; Monastero, R. ; Muscio, C. ; Parnetti, L. ; Perani, D. ; Serra, L. ; Silani, V. ; Tiraboschi, P. ; Padovani, A. ; Alberici, A. ; Alberoni, M. ; Amici, S. ; Appollonio, I. ; Arena, M. G. ; Arighi, A. ; Avanzi, S. ; Bagella, C. F. ; Baglio, F. ; Barocco, F. ; Belardinelli, N. ; Bonuccelli, U. ; Bottini, G. ; Bruno Bossio, R. ; Bruno, G. ; Buccomino, D. ; Cacchiò, G. ; Calabrese, E. ; Cerami, C. ; Costa, A. ; Cotelli, M. S. ; Cravello, L. ; Farina, E. ; Franceschi, M. ; Fumagalli, G. G. ; Magnani, G. ; Nemni, R. ; Perri, R. ; Saibene, F. L. ; Scarpini, E. ; Seripa, D. ; Sinforiani, E. ; Volontè, M. A. ; On behalf of DLB-SINdem study group ; Istituto Superiore di Sanità. / The Italian dementia with Lewy bodies study group (DLB-SINdem) : toward a standardization of clinical procedures and multicenter cohort studies design. In: Neurological Sciences. 2016 ; pp. 1-9.
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AU - Bonanni, L.

AU - Cagnin, A.

AU - Agosta, F.

AU - Babiloni, C.

AU - Borroni, B.

AU - Bozzali, M.

AU - Bruni, A. C.

AU - Filippi, M.

AU - Galimberti, D.

AU - Monastero, R.

AU - Muscio, C.

AU - Parnetti, L.

AU - Perani, D.

AU - Serra, L.

AU - Silani, V.

AU - Tiraboschi, P.

AU - Padovani, A.

AU - Alberici, A.

AU - Alberoni, M.

AU - Amici, S.

AU - Appollonio, I.

AU - Arena, M. G.

AU - Arighi, A.

AU - Avanzi, S.

AU - Bagella, C. F.

AU - Baglio, F.

AU - Barocco, F.

AU - Belardinelli, N.

AU - Bonuccelli, U.

AU - Bottini, G.

AU - Bruno Bossio, R.

AU - Bruno, G.

AU - Buccomino, D.

AU - Cacchiò, G.

AU - Calabrese, E.

AU - Cerami, C.

AU - Costa, A.

AU - Cotelli, M. S.

AU - Cravello, L.

AU - Farina, E.

AU - Franceschi, M.

AU - Fumagalli, G. G.

AU - Magnani, G.

AU - Nemni, R.

AU - Perri, R.

AU - Saibene, F. L.

AU - Scarpini, E.

AU - Seripa, D.

AU - Sinforiani, E.

AU - Volontè, M. A.

AU - On behalf of DLB-SINdem study group

AU - Istituto Superiore di Sanità

PY - 2016/9/13

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N2 - Dementia with Lewy bodies (DLB) causes elevated outlays for the National Health Systems due to high institutionalization rate and patients’ reduced quality of life and high mortality. Furthermore, DLB is often misdiagnosed as Alzheimer’s disease. These data motivate harmonized multicenter longitudinal cohort studies to improve clinical management and therapy monitoring. The Italian DLB study group of the Italian Neurological Society for dementia (SINdem) developed and emailed a semi-structured questionnaire to 572 national dementia centers (from primary to tertiary) to prepare an Italian large longitudinal cohort. The questionnaire surveyed: (1) prevalence and incidence of DLB; (2) clinical assessment; (3) relevance and availability of diagnostic tools; (4) pharmacological management of cognitive, motor, and behavioural disturbances; (5) causes of hospitalization, with specific focus on delirium and its treatment. Overall, 135 centers (23.6 %) contributed to the survey. Overall, 5624 patients with DLB are currently followed by the 135 centers in a year (2042 of them are new patients). The percentage of DLB patients was lower (27 ± 8 %) than that of Alzheimer’s disease and frontotemporal dementia (56 ± 27 %) patients. The majority of the centers (91 %) considered the clinical and neuropsychological assessments as the most relevant procedure for a DLB diagnosis. Nonetheless, most of the centers has availability of magnetic resonance imaging (MRI; 95 %), electroencephalography (EEG; 93 %), and FP-CIT single photon emission-computerized tomography (SPECT; 75 %) scan for clinical applications. It will be, therefore, possible to recruit a large harmonized Italian cohort of DLB patients for future cross-sectional and longitudinal multicenter studies.

AB - Dementia with Lewy bodies (DLB) causes elevated outlays for the National Health Systems due to high institutionalization rate and patients’ reduced quality of life and high mortality. Furthermore, DLB is often misdiagnosed as Alzheimer’s disease. These data motivate harmonized multicenter longitudinal cohort studies to improve clinical management and therapy monitoring. The Italian DLB study group of the Italian Neurological Society for dementia (SINdem) developed and emailed a semi-structured questionnaire to 572 national dementia centers (from primary to tertiary) to prepare an Italian large longitudinal cohort. The questionnaire surveyed: (1) prevalence and incidence of DLB; (2) clinical assessment; (3) relevance and availability of diagnostic tools; (4) pharmacological management of cognitive, motor, and behavioural disturbances; (5) causes of hospitalization, with specific focus on delirium and its treatment. Overall, 135 centers (23.6 %) contributed to the survey. Overall, 5624 patients with DLB are currently followed by the 135 centers in a year (2042 of them are new patients). The percentage of DLB patients was lower (27 ± 8 %) than that of Alzheimer’s disease and frontotemporal dementia (56 ± 27 %) patients. The majority of the centers (91 %) considered the clinical and neuropsychological assessments as the most relevant procedure for a DLB diagnosis. Nonetheless, most of the centers has availability of magnetic resonance imaging (MRI; 95 %), electroencephalography (EEG; 93 %), and FP-CIT single photon emission-computerized tomography (SPECT; 75 %) scan for clinical applications. It will be, therefore, possible to recruit a large harmonized Italian cohort of DLB patients for future cross-sectional and longitudinal multicenter studies.

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KW - Standardization of diagnostic procedures

KW - Survey

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