Early-Onset Dementia: Frequency, Diagnostic Procedures, and Quality Indicators in Three European Tertiary Referral Centers

Elles Konijnenberg, Seyed Mohammad Fereshtehnejad, Mara Ten Kate, Maria Eriksdotter, Philip Scheltens, Peter Johannsen, Gunhild Waldemar, Pieter Jelle Visser

Research output: Contribution to journalArticleAcademicpeer-review

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.

Original languageEnglish
Pages (from-to)146-151
Number of pages6
JournalAlzheimer Disease and Associated Disorders
Volume31
Issue number2
DOIs
Publication statusPublished - 1 May 2017

Cite this

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title = "Early-Onset Dementia: Frequency, Diagnostic Procedures, and Quality Indicators in Three European Tertiary Referral Centers",
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.",
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Early-Onset Dementia : Frequency, Diagnostic Procedures, and Quality Indicators in Three European Tertiary Referral Centers. / Konijnenberg, Elles; Fereshtehnejad, Seyed Mohammad; Ten Kate, Mara; Eriksdotter, Maria; Scheltens, Philip; Johannsen, Peter; Waldemar, Gunhild; Visser, Pieter Jelle.

In: Alzheimer Disease and Associated Disorders, Vol. 31, No. 2, 01.05.2017, p. 146-151.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Early-Onset Dementia

T2 - Frequency, Diagnostic Procedures, and Quality Indicators in Three European Tertiary Referral Centers

AU - Konijnenberg, Elles

AU - Fereshtehnejad, Seyed Mohammad

AU - Ten Kate, Mara

AU - Eriksdotter, Maria

AU - Scheltens, Philip

AU - Johannsen, Peter

AU - Waldemar, Gunhild

AU - Visser, Pieter Jelle

PY - 2017/5/1

Y1 - 2017/5/1

N2 - 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.

AB - 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.

KW - diagnostic procedures

KW - early-onset dementia

KW - quality indicators

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U2 - 10.1097/WAD.0000000000000152

DO - 10.1097/WAD.0000000000000152

M3 - Article

VL - 31

SP - 146

EP - 151

JO - Alzheimer Disease and Associated Disorders

JF - Alzheimer Disease and Associated Disorders

SN - 0893-0341

IS - 2

ER -