Analysis of Psychological Symptoms Following Disclosure of Amyloid–Positron Emission Tomography Imaging Results to Adults With Subjective Cognitive Decline
Camilla Caprioglio, Federica Ribaldi, Leonie N.C. Visser, Carolina Minguillón, Lyduine E. Collij, Oriol Grau‐Rivera, Philip Zeyen, José Luis Molinuevo, Juan Domingo Gispert, Valentina Garibotto, Christian Moro, Zuzana Walker, Paul Edison, Jean‐François Démonet, Frederik Barkhof, Philip Scheltens, Isadora Lopes Alves, Rossella Gismondi, Gill Farrar, Andrew Stephens, Frank Jessen, Giovanni B. Frisoni, Daniele Altomare, Carla Abdelnour, Núria Aguilera, Leon Aksman, Emilio Alarcón‐Martín, Montserrat Alegret, Sílvia Alonso-Lana, Daniele Altomare, Pia Haubro Andersen, Majd Arab, Malin Aspö, Ilona Bader, Ilse Bader, Nigel Banton, Frederik Barkhof, Rodrigo Barnes, Dawn Barrie, Mark Battle, Ana Belén Collado, Julie Bellet, Johannes Berkhof, Marine Biger, Cindy Birck, Gérard N. Bischof, Merçé Boada, Ronald Boellaard, Nenad Bogdanović, Ariane Bollack, Stéphanie Bombois, Stefan Borg, Anne Börjesson‐Hanson, Vladimir Boskov, Justine Boutantin, Claire Boutoleau‐Bretonnière, Femke H. Bouwman, Laëtitia Breuilh, Eva Bringman, Baptiste Brunel, Marco Bucci, Christopher Buckley, Mar Buendía, Santi Bullich, Anna Calvet, Laia Cañada, Marta Cañada, Camilla Caprioglio, M. Jorge Cardoso, Jasmine Carlier, Elise Carre, Isabelle Carrié, Pascaline Cassagnaud, E. Cassol, M. Castilla, Elodie Cazalon, Tiphaine Chaarriau, Rachel Chaigeau, T. M. Chalmers, Marie-Thérèse Clerc, Montserrat Clerigué, Emmanuel Cognat, Nina Coll, Lyduine E. Collij, Peter Connely, Elodie Cordier, Corine Costes, Camille Coulange, Hélène Courtemanche, E. Creisson, C. Crinquette, Rosario Cuevas, Marie-Noëlle Cufi, Sophie Dardenne, María de Arriba, Casper de Costa Luis, Yvonne de Gier, Delphine de Verbizier Lonjon, Veronique Dekker, Bérengère Dekyndt
Abstract
Importance: Individuals who are amyloid-positive with subjective cognitive decline and clinical features increasing the likelihood of preclinical Alzheimer disease (SCD+) are at higher risk of developing dementia. Some individuals with SCD+ undergo amyloid-positron emission tomography (PET) as part of research studies and frequently wish to know their amyloid status; however, the disclosure of a positive amyloid-PET result might have psychological risks. Objective: To assess the psychological outcomes of the amyloid-PET result disclosure in individuals with SCD+ and explore which variables are associated with a safer disclosure in individuals who are amyloid positive. Design, Setting, and Participants: This prospective, multicenter study was conducted as part of The Amyloid Imaging to Prevent Alzheimer Disease Diagnostic and Patient Management Study (AMYPAD-DPMS) (recruitment period: from April 2018 to October 2020). The setting was 5 European memory clinics, and participants included patients with SCD+ who underwent amyloid-PET. Statistical analysis was performed from July to October 2022. Exposures: Disclosure of amyloid-PET result. Main Outcomes and Measures: Psychological outcomes were defined as (1) disclosure related distress, assessed using the Impact of Event Scale-Revised (IES-R; scores of at least 33 indicate probable presence of posttraumatic stress disorder [PTSD]); and (2) anxiety and depression, assessed using the Hospital Anxiety and Depression scale (HADS; scores of at least 15 indicate probable presence of severe mood disorder symptoms). Results: After disclosure, 27 patients with amyloid-positive SCD+ (median [IQR] age, 70 [66-74] years; gender: 14 men [52%]; median [IQR] education: 15 [13 to 17] years, median [IQR] Mini-Mental State Examination [MMSE] score, 29 [28 to 30]) had higher median (IQR) IES-R total score (10 [2 to 14] vs 0 [0 to 2]; P < .001), IES-R avoidance (0.00 [0.00 to 0.69] vs 0.00 [0.00 to 0.00]; P < .001), IES-R intrusions (0.50 [0.13 to 0.75] vs 0.00 [0.00 to 0.25]; P < .001), and IES-R hyperarousal (0.33 [0.00 to 0.67] vs 0.00 [0.00 to 0.00]; P < .001) scores than the 78 patients who were amyloid-negative (median [IQR], age, 67 [64 to 74] years, 45 men [58%], median [IQR] education: 15 [12 to 17] years, median [IQR] MMSE score: 29 [28 to 30]). There were no observed differences between amyloid-positive and amyloid-negative patients in the median (IQR) HADS Anxiety (-1.0 [-3.0 to 1.8] vs -2.0 [-4.8 to 1.0]; P = .06) and Depression (-1.0 [-2.0 to 0.0] vs -1.0 [-3.0 to 0.0]; P = .46) deltas (score after disclosure - scores at baseline). In patients with amyloid-positive SCD+, despite the small sample size, higher education was associated with lower disclosure-related distress (ρ = -0.43; P = .02) whereas the presence of study partner was associated with higher disclosure-related distress (W = 7.5; P = .03). No participants with amyloid-positive SCD+ showed probable presence of PTSD or severe anxiety or depression symptoms at follow-up. Conclusions and Relevance: The disclosure of a positive amyloid-PET result to patients with SCD+ was associated with a bigger psychological change, yet such change did not reach the threshold for clinical concern.