[en] Lecanemab, the first anti-amyloid therapy approved by the European Medicines Agency, has demonstrated a statistically and clinically significant but moderate slowing of decline in early Alzheimer's disease (AD). In contrast, its long-term impact on the disease course is not formally established. Any benefit, therefore, needs to be carefully weighed against its adverse effects and practical constraints, which must be discussed with patients and caregivers within a shared decision-making process (SMD). However, applying SDM in this context is challenging due to treatment complexity, cognitive impairment and the involvement of care partners. Supported decision-making, which aims to assist individuals with decisional limitations in participating in important choices, has been promoted as a relevant approach. In this bicentric study conducted in France, we evaluated a simulated supported decision-making process in 25 patients with early AD who were eligible for lecanemab and faced the decision to choose anti-amyloid immunotherapy. We created a written decision aid using a consensus-based method to provide clear, accurate, and scientifically validated information to patients and care partners. After a one-week reflection period, both patients and care partners demonstrated a good overall understanding of the information provided, though care partners showed higher levels of comprehension and retention. The treatment was considered acceptable by most patients and their care partners. While patients ultimately remain the decision-makers, these findings highlight the central role of care partners in strengthening supported decision-making, notably through frameworks such as the French "trusted person" model.
Disciplines :
Neurology
Author, co-author :
Burry, E ✱; University Lille, Inserm, CHU Lille, Lille Neuroscience & Cognition, LabEx DISTALZ, 59000 Lille, France, Université Bourgogne Europe, CHU Dijon Bourgogne, Service de Neurologie, CMRR, Dijon, France
Plumacker, Florence ✱; Université de Liège - ULiège > Département des sciences cliniques > Neurologie
Villain, N ; Sorbonne Université, Inserm U1127, CNRS 7225, Institut du Cerveau - ICM, Paris, France, AP-HP Sorbonne Université, Pitié-Salpêtrière Hospital, Department of Neurology, Institute of Memory and Alzheimer's Disease, Paris, France
Amaral, S; Université Bourgogne Europe, CHU Dijon Bourgogne, Service de Neurologie, CMRR, Dijon, France
Damier, P ; CHU de Nantes, Clinique neurologique, CIC 1413, Hôpital Laennec, Nantes Université, UFR médecine, Nantes, France
Delrieu, J; Gerontopôle, Inserm U1027, Alzheimer's Disease Research and Clinical Center, Toulouse University Hospital, Toulouse, France
Mackowiak, M-A; University Lille, Inserm, CHU Lille, Lille Neuroscience & Cognition, LabEx DISTALZ, 59000 Lille, France
Michalon, R; École des Hautes Etudes en Sciences Sociales, Paris, France, CAK-CRHST - Centre Alexandre Koyré - Centre de Recherche en Histoire des Sciences et des Techniques, Paris, France
Mohr, S; Université Bourgogne Europe, CHU Dijon Bourgogne, Service de Neurologie, CMRR, Dijon, France
Planche, V; Institut des Maladies Neurodégénératives, CNRS UMR 5293, University Bordeaux, 33000 Bordeaux, France, Centre Mémoire Ressources Recherches, Service de Neurologie des Maladies Neurodégénératives, Pôle de Neurosciences Cliniques, CHU de Bordeaux, 33000 Bordeaux, France
Rollin-Sillaire, A; University Lille, Inserm, CHU Lille, Lille Neuroscience & Cognition, LabEx DISTALZ, 59000 Lille, France
Tannou, T ; Département de médecine et spécialités médicales, Faculté de Médecine, Université de Montréal, Montréal, QC, Canada
Wallon, D; Université Rouen Normandie, Inserm U1245, CHU de Rouen, Neurology Department and CNRMAJ, Rouen, France
Desmoulin Canselier, S; DR CNRS, Droit et Changement Social, UMR 6297 DCS Nantes Université/CNRS, Nantes, France
Lebouvier, T ✱; University Lille, Inserm, CHU Lille, Lille Neuroscience & Cognition, LabEx DISTALZ, 59000 Lille, France, Centre hospitalier universitaire de LILLE, CMRR, CNRMAJ & Unité d'Expertise Cognitivo-Motrice de l'Hôpital Roger Salengro, 2 avenue Oscar Lambret, 59037 Lille cedex, France. Electronic address: thibaud.lebouvier@chu-lille.fr
François, G ✱; University Lille, Inserm, CHU Lille, Lille Neuroscience & Cognition, LabEx DISTALZ, 59000 Lille, France
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