Analysis of Psychological Symptoms Following Disclosure of Amyloid–Positron Emission Tomography Imaging Results to Adults With Subjective Cognitive Decline
Authors: Caprioglio Camilla , Ribaldi Federica , Visser Leonie N. C. , Minguillon Carolina , Collij Lyduine E. , Grau-Rivera Oriol , Zeyen Philip , Molinuevo José Luis , Gispert Juan Domingo , Garibotto Valentina , Moro Christian , Walker Zuzana , Edison Paul , Demonet Jean-François , Barkhof Frederik , Scheltens Philip , Alves Isadora Lopes , Gismondi Rossella , Farrar Gill , Stephens Andrew W. , Jessen Frank , Frisoni Giovanni B. , Altomare Daniele ,   AMYPAD consortium, Abdelnour Carla , Aguilera Nuria , Aksman Leon , Alarcón-Martín Emilio , Alegret Montse , Alonso-Lana Silvia , Altomare Daniele , Andersen Pia , Arab Majd , Aspö Malin , Bader Ilona , Bader Ilse , Banton Nigel , Barkhof Frederik , Barnes Rodrigo , Barrie Dawn , Battle Mark , Belén Collado Ana , Bellet Julie , Berkhof Johannes , Biger Marine , Birck Cindy , Bischof Gerard , Boada Mercè , Boellaard Ronald , Bogdanovic Nenad , Bollack Ariane , Bombois Stéphanie , Borg Stefan , Borjesson-Hanson Anne , Boskov Vladimir , Boutantin Justine , Boutoleau-Bretonniere Claire , Bouwman Femke , Breuilh Laetitia , Bringman Eva , Brunel Baptiste , Bucci Marco , Buckley Chris , Buendía Mar , Bullich Santi , Calvet Anna , Cañada Laia , Cañada Marta , Caprioglio Camilla , Cardoso Jorge , Carlier Jasmine , Carre Elise , Carrie Isabelle , Cassagnaud Pascaline , Cassol Emmanuelle , Castilla-Martí Miguel , Cazalon Elodie , Chaarriau Tiphaine , Chaigeau Rachel , Chalmers Taylor , Clerc Marie-Thérèse , Clerigue Montserrat , Cognat Emmanuel , Coll Nina , Collij Lyduine E , Connely Peter , Cordier Elodie , Costes Corine , Coulange Camille , Courtemanche Hélène , Creisson Eric , Crinquette Charlotte , Cuevas Rosario , Cufi Marie-Noëlle , Dardenne Sophie , de Arriba Maria , de Costa Luis Casper , de Gier Yvonne , de Verbizier Lonjon Delphine , Dekker Veronique , Dekyndt Bérengère , Delbeuck Xavier , Delrieu Julien , Demonet Jean-François , Deramecourt Vincent , Desclaux Françoise , Diaz Carlos , Diego Susana , Djafar Mehdi , Dölle Britta , Doull Laura , Dricot Laurence , Drzezga Alexander , Dubois Bruno , Dumont Julien , Dumur Jean , Dumurgier Julien , Dvorak Martin , Ecay Mirian , Edison Paul , Escher Claus , Estanga Ainara , Esteban Ester , Fanjaud Guy , Farrar Gill , Fauria Karine , Felez Sanchez Marta , Feukam Talla Patrick , Ford Lisa , Frisoni Giovanni B , Fuster David , Gabelle Audrey , Garibotto Valentina , Gaubert Sinead , Gauci Cédric , Geldhof Christine , Georges Jean , Ghika Joseph , Gismondi Rossella , Gispert Juan Domingo , González Elena , Goovaerts Valerie , Goulart Denis Mariano , Grasselli Caroline , Grau-Rivera Oriol , Gray Katherine , Greensmith Martin , Grozn Laure , Guillemaud Céline , Gunn Fiona , Guntur Ramkumar Prasad , Hagman Göran , Hansseuw Bernard , Heeman Fiona , Hendriks Janine , Himmelmann Jakob , Hitzel Anne , Hives Florent , Hoenig Merle , Hourrègue Claire , Hudson Justine , Huguet Jordi , Ibarria Marta , Iidow Ifrah , Indart Sandrine , Ingala Silvia , Ivanoiu Adrian , Jacquemont Charlotte , Jelic Vesna , Jessen Frank , Jiao Jieqing , Jofresa Sara , Jonsson Cathrine , Kaliukhovich Dzmitry , Kern Silke , Kivipelto Miia , Knezevic Iva , Kuchcinski Grégory , Laforce Manon , Lafuente Asunción , Lala Françoise , Lammertsma Adriaan , Lax Michelle , Lebouvier Thibaud , Lee Ho-Yun , Lee Lean , Leeuwis Annebet , Lefort Amandine , Legrand Jean-François , Leroy Mélanie , Lesoil Markowski Constance , Levy Marcel , Lhommel  Renaud , Lopes Renaud , Lopes Alves Isadora , Lorenzini Luigi , Lorette Adrien , Luckett Emma , Lundin Marie , Mackowiak Marie-Anne , Malotaux Vincent , Manber Richard , Manyakov Nikolay , Markiewicz Pawel , Marne Paula , Marquié Marta , Martín Elvira , Martínez Joan , Martinez Lage Pablo , Mastenbroek Sophie E , Maureille Aurélien , Meersmans Karen , Mett Anja , Milne Joseph , Minguillón Carolina , Modat Marc , Molinuevo José Luis , Montrreal Laura , Moro Christian , Müller Theresa , Muniz Graciela , Mutsarts Henk Jan , Nilsson Ted , Ninerola Aida , Nordberg Agneta , Novaes Wilse , Nuno Carmelo Pires Silva Joao , Operto Greg , Orellana Adela , Ousset Pierre-Jean , Outteryck Olivier , Pallardy Amandine , Palombit Alessandro , Pancho Ana , Pappon Martin , Paquet Claire , Pariente Jérémie , Pasquier Florence , Payoux Pierre , Peaker Harry , Pelejà Esther , Pennetier Delphine , Pérez-Cordón Alba , Perissinotti Andrés , Perrenoud Matthieu Paul , Petit Sandrine , Petyt Grégory , Pfeil Julia , Pirotte Blanche , Pla Sandra , Plaza Wuthrich Sonia , Poitrine Lea , Pollet Marianne , Poncelet Jean-Benoit , Prior John , Pruvo Jean-Pierre , Putallaz Pauline , Queneau Mathieu , Quenon  Lisa , Rădoi Andreea , Rafiq Marie , Ramage Fiona , Ramis Maribel , Reinwald Michael , Rios Gonzalo , Ritchie Craig , Rodriguez Elena , Rollin Adeline , Rouaud Olivier , Sacuiu Simona , Saint-Aubert Laure , Sala Arianna , Salabert Anne-Sophie , Saldias Jon , Salvadó Gemma , Sanabria Angela , Sannemann Lena , Sastre Nathalie , Savina Daniela , Savitcheva Irina , Schaeverbeke Jolien , Scheltens Philip , Schildermans Carine , Schmidt Mark , Schöll Michael , Schuermans Jeroen , Semah Franck , Shekari Mahnaz , Skoog Ingmar , Sotolongo-Grau Oscar , Stephens Andrew , Stewart Tiffany , Stutzmann Jennyfer , Tait Murray , Tárraga Lluis , Tartari Juan Pablo , Tysen-backstrom Ann-christine , Valero Sergi , Vallez Garcia David , van Berckel Bart N M , van Essen Martijn , Van Laere Koen , van Leur Jeroen , van Maurik Ingrid S , Vandenberghe Rik , Vellas Bruno , Virolinen Jukka , Visser Pieter Jelle , Walker Zuzana , Walles Håkan , Wallin Emilia , Whitelaw Grant , Wimberley Catriona , Win          Zarni , Wink Alle Meije , Wolz Robin , Woodside John , Yaqub Maqsood , Zettergren Anna , Zeyen Philip 
Published: January 2023

ImportanceIndividuals 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.ObjectiveTo 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 ParticipantsThis 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.ExposuresDisclosure of amyloid-PET result.Main Outcomes and MeasuresPsychological 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).ResultsAfter 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 &amp;lt; .001), IES-R avoidance (0.00 [0.00 to 0.69] vs 0.00 [0.00 to 0.00]; P &amp;lt; .001), IES-R intrusions (0.50 [0.13 to 0.75] vs 0.00 [0.00 to 0.25]; P &amp;lt; .001), and IES-R hyperarousal (0.33 [0.00 to 0.67] vs 0.00 [0.00 to 0.00]; P &amp;lt; .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 RelevanceThe 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.