Biomarker counseling, disclosure of diagnosis and follow‐up in patients with mild cognitive impairment: A European Alzheimer's disease consortium survey
Kristian Frederiksen
(1)
,
Thomas Nielsen
(1)
,
Ildebrando Appollonio
(2)
,
Birgitte Bo Andersen
(1)
,
Mario Riverol
(3)
,
Mercè Boada
(4, 5)
,
Mathieu Ceccaldi
(6, 7)
,
Bruno Dubois
(8)
,
Sebastiaan Engelborghs
(9, 10)
,
Lutz Frölich
(11)
,
Lucrezia Hausner
(11)
,
Audrey Gabelle
(12)
,
Tomasz Gabryelewicz
(13)
,
Timo Grimmer
(14)
,
Bernard Hanseeuw
(15)
,
Jakub Hort
(16)
,
Jacques Hugon
(17, 18)
,
Vesna Jelic
(19)
,
Anne Koivisto
(20, 21)
,
Milica Kramberger
(22)
,
Thibaud Lebouvier
(23)
,
Alberto Lleó
(24)
,
Alexandre de Mendonça
(25)
,
Flavio Nobili
(26, 27)
,
Pierre‐jean Ousset
(28, 29)
,
Robert Perneczky
(30, 31, 32, 33)
,
Marcel Olde Rikkert
(34)
,
David Robinson
(35)
,
Olivier Rouaud
,
Elisabet Sánchez
(36)
,
Isabel Santana
(37)
,
Nikolaos Scarmeas
(38, 39)
,
Katerina Sheardova
(40)
,
Stephanie Sloan
(41)
,
Luiza Spiru
(42)
,
Elka Stefanova
(43)
,
Latchezar Traykov
,
Görsev Yener
(44)
,
Gunhild Waldemar
(1)
1
UCPH -
University of Copenhagen = Københavns Universitet
2 UNIMIB - Università degli Studi di Milano-Bicocca = University of Milano-Bicocca
3 UPNA - Universidad Pública de Navarra [Espagne] = Public University of Navarra
4 UIC - Universitat Internacional de Catalunya [Barcelona]
5 ISCIII - Instituto de Salud Carlos III [Madrid]
6 INS - Institut de Neurosciences des Systèmes
7 TIMONE - Hôpital de la Timone [CHU - APHM]
8 CHU Pitié-Salpêtrière [AP-HP]
9 UA - University of Antwerp
10 VUB - Vrije Universiteit Brussel [Bruxelles]
11 Universität Heidelberg [Heidelberg] = Heidelberg University
12 Hôpital Gui de Chauliac [CHU Montpellier]
13 CMDIK - Mossakowski Medical Research Centre
14 TUM - Technische Universität Munchen - Technical University Munich - Université Technique de Munich
15 UCL - Université Catholique de Louvain = Catholic University of Louvain
16 University Hospital Motol [Prague]
17 Hôpital Lariboisière-Fernand-Widal [APHP]
18 UPCité - Université Paris Cité
19 Karolinska University Hospital [Stockholm]
20 University of Eastern Finland
21 Helsingin yliopisto = Helsingfors universitet = University of Helsinki
22 University of Ljubljana
23 Université de Lille
24 Hospital de la Santa Creu i Sant Pau
25 ULISBOA - Universidade de Lisboa = University of Lisbon = Université de Lisbonne
26 UniGe - Università degli studi di Genova = University of Genoa
27 IRCCS Ospedale Policlinico San Martino [Genoa, Italy]
28 CHU Toulouse - Centre Hospitalier Universitaire de Toulouse
29 Equipe Vieillissement (CERPOP)
30 LMU - Ludwig-Maximilians University [Munich]
31 DZNE - German Research Center for Neurodegenerative Diseases - Deutsches Zentrum für Neurodegenerative Erkrankungen
32 SyNergy - Munich Cluster for systems neurology [Munich]
33 Imperial College London
34 Radboud University Medical Center [Nijmegen]
35 St James's University Hospital
36 Hospital Universitario Ramón y Cajal [Madrid]
37 UC - University of Coimbra [Portugal]
38 NKUA - National and Kapodistrian University of Athens
39 CUIMC - Columbia University Irving Medical Center
40 St. Anne’s University Hospital [Brno]
41 Ninewells Hospital and Medical School [Dundee]
42 UMPCD - University of Medicine and Pharmacy “Carol Davila”
43 University of Belgrade [Belgrade]
44 DEÜ - Dokuz Eylül Üniversitesi = Dokuz Eylül University [Izmir]
2 UNIMIB - Università degli Studi di Milano-Bicocca = University of Milano-Bicocca
3 UPNA - Universidad Pública de Navarra [Espagne] = Public University of Navarra
4 UIC - Universitat Internacional de Catalunya [Barcelona]
5 ISCIII - Instituto de Salud Carlos III [Madrid]
6 INS - Institut de Neurosciences des Systèmes
7 TIMONE - Hôpital de la Timone [CHU - APHM]
8 CHU Pitié-Salpêtrière [AP-HP]
9 UA - University of Antwerp
10 VUB - Vrije Universiteit Brussel [Bruxelles]
11 Universität Heidelberg [Heidelberg] = Heidelberg University
12 Hôpital Gui de Chauliac [CHU Montpellier]
13 CMDIK - Mossakowski Medical Research Centre
14 TUM - Technische Universität Munchen - Technical University Munich - Université Technique de Munich
15 UCL - Université Catholique de Louvain = Catholic University of Louvain
16 University Hospital Motol [Prague]
17 Hôpital Lariboisière-Fernand-Widal [APHP]
18 UPCité - Université Paris Cité
19 Karolinska University Hospital [Stockholm]
20 University of Eastern Finland
21 Helsingin yliopisto = Helsingfors universitet = University of Helsinki
22 University of Ljubljana
23 Université de Lille
24 Hospital de la Santa Creu i Sant Pau
25 ULISBOA - Universidade de Lisboa = University of Lisbon = Université de Lisbonne
26 UniGe - Università degli studi di Genova = University of Genoa
27 IRCCS Ospedale Policlinico San Martino [Genoa, Italy]
28 CHU Toulouse - Centre Hospitalier Universitaire de Toulouse
29 Equipe Vieillissement (CERPOP)
30 LMU - Ludwig-Maximilians University [Munich]
31 DZNE - German Research Center for Neurodegenerative Diseases - Deutsches Zentrum für Neurodegenerative Erkrankungen
32 SyNergy - Munich Cluster for systems neurology [Munich]
33 Imperial College London
34 Radboud University Medical Center [Nijmegen]
35 St James's University Hospital
36 Hospital Universitario Ramón y Cajal [Madrid]
37 UC - University of Coimbra [Portugal]
38 NKUA - National and Kapodistrian University of Athens
39 CUIMC - Columbia University Irving Medical Center
40 St. Anne’s University Hospital [Brno]
41 Ninewells Hospital and Medical School [Dundee]
42 UMPCD - University of Medicine and Pharmacy “Carol Davila”
43 University of Belgrade [Belgrade]
44 DEÜ - Dokuz Eylül Üniversitesi = Dokuz Eylül University [Izmir]
Kristian Frederiksen
- Fonction : Auteur
- PersonId : 823543
- ORCID : 0000-0001-5124-4417
Mathieu Ceccaldi
- Fonction : Auteur
- PersonId : 757312
- ORCID : 0000-0002-4924-6736
Audrey Gabelle
- Fonction : Auteur
- PersonId : 757644
- ORCID : 0000-0002-7648-9194
Thibaud Lebouvier
- Fonction : Auteur
- PersonId : 754049
- IdHAL : thibaud-lebouvier
- ORCID : 0000-0002-6630-394X
- IdRef : 177112190
Alberto Lleó
- Fonction : Auteur
- PersonId : 792181
- ORCID : 0000-0002-2568-5478
Flavio Nobili
- Fonction : Auteur
- PersonId : 785159
- ORCID : 0000-0001-9811-0897
Olivier Rouaud
- Fonction : Auteur
Nikolaos Scarmeas
- Fonction : Auteur
- PersonId : 761369
- ORCID : 0000-0001-6453-8908
Latchezar Traykov
- Fonction : Auteur
Résumé
Objectives: Mild cognitive impairment (MCI) is associated with an increased risk of further cognitive decline, partly depending on demographics and biomarker status. The aim of the present study was to survey the clinical practices of physicians in terms of biomarker counseling, management, and follow-up in European expert centers diagnosing patients with MCI.
Methods: An online email survey was distributed to physicians affiliated with European Alzheimer's disease Consortium centers (Northern Europe: 10 centers; Eastern and Central Europe: 9 centers; and Southern Europe: 15 centers) with questions on attitudes toward biomarkers and biomarker counseling in MCI and dementia. This included postbiomarker counseling and the process of diagnostic disclosure of MCI, as well as treatment and follow-up in MCI.
Results: The response rate for the survey was 80.9% (34 of 42 centers) across 20 countries. A large majority of physicians had access to biomarkers and found them useful. Pre- and postbiomarker counseling varied across centers, as did practices for referral to support groups and advice on preventive strategies. Less than half reported discussing driving and advance care planning with patients with MCI.
Conclusions: The variability in clinical practices across centers calls for better biomarker counseling and better training to improve communication skills. Future initiatives should address the importance of communicating preventive strategies and advance planning.