Biomarker counselling, disclosure of diagnosis and follow-up in patients with mild cognitive impairment: A European Alzheimer´s Disease Consortium survey
Kristian Steen Frederiksen 1 , T Rune Nielsen 1 , Ildebrando Appollonio 2 , Birgitte Bo Andersen 1 , Mario Riverol 3 , Mercè Boada 4 5 , Mathieu Ceccaldi 6 , Bruno Dubois 7 , Sebastiaan Engelborghs 8 9 , Lutz Frölich 10 , Lucrezia Hausner 10 , Audrey Gabelle 11 , Tomasz Gabryelewicz 12 , Timo Grimmer 13 , Bernard Hanseeuw 14 , Jakub Hort 15 , Jacques Hugon 16 , Vesna Jelic 17 , Anne Koivisto 18 19 , Milica G Kramberger 20 , Thibaud Lebouvier 21 , Alberto Lleó 22 , Alexandre de Mendonça 23 , Flavio Nobili 24 25 , Pierre-Jean Ousset 26 , Robert Perneczky 27 28 29 30 , Marcel Olde Rikkert 31 , David Robinson 32 , Olivier Rouaud 33 , Elisabet Sánchez 34 , Isabel Santana 35 36 , Nikolaos Scarmeas 37 38 , Katerina Sheardova 39 , Stephanie Sloan 40 , Luiza Spiru 41 42 , Elka Stefanova 43 , Latchezar Traykov 44 , Görsev Yener 45 , Gunhild Waldemar 1
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 counselling, 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; Southern Europe: 15 centers) with questions on attitudes towards biomarkers and biomarker counselling in MCI and dementia. This included post-biomarker counselling 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 post-biomarker counselling 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 counselling and better training to improve communication skills. Future initiatives should address the importance of communicating preventive strategies and advance planning.