Elles Konijnenberg1, Seyed-Mohammad Fereshtehnejad, Mara Ten Kate, Maria Eriksdotter, Philip Scheltens, Peter Johannsen, Gunhild Waldemar, Pieter Jelle Visser. 1. *Alzheimer Center & Department of Neurology, VU University Medical Center, Amsterdam ∥Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands †Department of Neurobiology, Care Sciences, and Society (NVS), Division of Clinical Geriatrics, Karolinska Institutet ‡Department of Geriatric Medicine, Karolinska University Hospital, Huddinge, Stockholm, Sweden §Department of Neurology, Danish Dementia Research Center, Rigshospitalet, Copenhagen, Denmark.
Abstract
BACKGROUND: Early-onset dementia (EOD) is a rare condition, with an often atypical clinical presentation, and it may therefore be challenging to diagnose. Specialized memory clinics vary in the type of patients seen, diagnostic procedures applied, and the pharmacological treatment given. The aim of this study was to investigate quality-of-care indicators in subjects with EOD from 3 tertiary memory clinics in 3 European countries. METHODS: We included 1325 newly diagnosed EOD patients, ages 65 years or younger, between January 1, 2007 and December 31, 2013, from the Danish Dementia Registry (Rigshospitalet, Copenhagen), the Swedish Dementia Registry ("SveDem", Karolinska University Hospital, Stockholm), and the Amsterdam Dementia Cohort (VU University Medical Center). RESULTS: The frequency of EOD among all dementia patients was significantly lower in Copenhagen (410, 20%) and Stockholm (284, 21%) compared with Amsterdam (631, 48%). Not all quality indicator targets were met, such as the time to diagnosis, the mini-mental state examination score available, and the prescription of cholinesterase inhibitors. Cerebrospinal fluid sampling, registered in 2 sites, was performed in over 80% of the subjects. CONCLUSIONS: In tertiary referral centers in Copenhagen, Stockholm, and Amsterdam, quality indicators were not always met for patients with EOD. Results partly reflect differences in referral pattern, the application of diagnostic criteria, and local best practices. Standardized international procedures for patients with EOD may reduce this variability.
BACKGROUND: Early-onset dementia (EOD) is a rare condition, with an often atypical clinical presentation, and it may therefore be challenging to diagnose. Specialized memory clinics vary in the type of patients seen, diagnostic procedures applied, and the pharmacological treatment given. The aim of this study was to investigate quality-of-care indicators in subjects with EOD from 3 tertiary memory clinics in 3 European countries. METHODS: We included 1325 newly diagnosed EOD patients, ages 65 years or younger, between January 1, 2007 and December 31, 2013, from the Danish Dementia Registry (Rigshospitalet, Copenhagen), the Swedish Dementia Registry ("SveDem", Karolinska University Hospital, Stockholm), and the Amsterdam Dementia Cohort (VU University Medical Center). RESULTS: The frequency of EOD among all dementiapatients was significantly lower in Copenhagen (410, 20%) and Stockholm (284, 21%) compared with Amsterdam (631, 48%). Not all quality indicator targets were met, such as the time to diagnosis, the mini-mental state examination score available, and the prescription of cholinesterase inhibitors. Cerebrospinal fluid sampling, registered in 2 sites, was performed in over 80% of the subjects. CONCLUSIONS: In tertiary referral centers in Copenhagen, Stockholm, and Amsterdam, quality indicators were not always met for patients with EOD. Results partly reflect differences in referral pattern, the application of diagnostic criteria, and local best practices. Standardized international procedures for patients with EOD may reduce this variability.
Authors: Eddie C Stage; Diana Svaldi; Meredith Phillips; Victor Hugo Canela; Tugce Duran; Naira Goukasian; Shannon L Risacher; Andrew J Saykin; Liana G Apostolova Journal: Alzheimers Res Ther Date: 2020-08-05 Impact factor: 6.982
Authors: Gorm Thorlacius-Ussing; Marie Bruun; Le Gjerum; Kristian S Frederiksen; Hanneke F M Rhodius-Meester; Wiesje M van der Flier; Gunhild Waldemar; Steen G Hasselbalch Journal: J Alzheimers Dis Date: 2021 Impact factor: 4.472