Analysis of Psychological Symptoms Following Disclosure of Amyloid–Positron Emission Tomography Imaging Results to Adults With Subjective Cognitive Decline
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Published:2023-01-13
Issue:1
Volume:6
Page:e2250921
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ISSN:2574-3805
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Container-title:JAMA Network Open
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language:en
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Short-container-title:JAMA Netw Open
Author:
Caprioglio Camilla12, Ribaldi Federica12, Visser Leonie N. C.34, Minguillon Carolina567, Collij Lyduine E.8, Grau-Rivera Oriol567, Zeyen Philip9, Molinuevo José Luis510, Gispert Juan Domingo5611, Garibotto Valentina121314, Moro Christian12, Walker Zuzana1516, Edison Paul17, Demonet Jean-François18, Barkhof Frederik819, Scheltens Philip20, Alves Isadora Lopes8, Gismondi Rossella21, Farrar Gill22, Stephens Andrew W.21, Jessen Frank122324, Frisoni Giovanni B.12, Altomare Daniele12, Abdelnour Carla25, Aguilera Nuria25, Aksman Leon25, Alarcón-Martín Emilio25, Alegret Montse25, Alonso-Lana Silvia25, Altomare Daniele25, Andersen Pia25, Arab Majd25, Aspö Malin25, Bader Ilona25, Bader Ilse25, Banton Nigel25, Barkhof Frederik25, Barnes Rodrigo25, Barrie Dawn25, Battle Mark25, Belén Collado Ana25, Bellet Julie25, Berkhof Johannes25, Biger Marine25, Birck Cindy25, Bischof Gerard25, Boada Mercè25, Boellaard Ronald25, Bogdanovic Nenad25, Bollack Ariane25, Bombois Stéphanie25, Borg Stefan25, Borjesson-Hanson Anne25, Boskov Vladimir25, Boutantin Justine25, Boutoleau-Bretonniere Claire25, Bouwman Femke25, Breuilh Laetitia25, Bringman Eva25, Brunel Baptiste25, Bucci Marco25, Buckley Chris25, Buendía Mar25, Bullich Santi25, Calvet Anna25, Cañada Laia25, Cañada Marta25, Caprioglio Camilla25, Cardoso Jorge25, Carlier Jasmine25, Carre Elise25, Carrie Isabelle25, Cassagnaud Pascaline25, Cassol Emmanuelle25, Castilla-Martí Miguel25, Cazalon Elodie25, Chaarriau Tiphaine25, Chaigeau Rachel25, Chalmers Taylor25, Clerc Marie-Thérèse25, Clerigue Montserrat25, Cognat Emmanuel25, Coll Nina25, Collij Lyduine E25, Connely Peter25, Cordier Elodie25, Costes Corine25, Coulange Camille25, Courtemanche Hélène25, Creisson Eric25, Crinquette Charlotte25, Cuevas Rosario25, Cufi Marie-Noëlle25, Dardenne Sophie25, de Arriba Maria25, de Costa Luis Casper25, de Gier Yvonne25, de Verbizier Lonjon Delphine25, Dekker Veronique25, Dekyndt Bérengère25, Delbeuck Xavier25, Delrieu Julien25, Demonet Jean-François25, Deramecourt Vincent25, Desclaux Françoise25, Diaz Carlos25, Diego Susana25, Djafar Mehdi25, Dölle Britta25, Doull Laura25, Dricot Laurence25, Drzezga Alexander25, Dubois Bruno25, Dumont Julien25, Dumur Jean25, Dumurgier Julien25, Dvorak Martin25, Ecay Mirian25, Edison Paul25, Escher Claus25, Estanga Ainara25, Esteban Ester25, Fanjaud Guy25, Farrar Gill25, Fauria Karine25, Felez Sanchez Marta25, Feukam Talla Patrick25, Ford Lisa25, Frisoni Giovanni B25, Fuster David25, Gabelle Audrey25, Garibotto Valentina25, Gaubert Sinead25, Gauci Cédric25, Geldhof Christine25, Georges Jean25, Ghika Joseph25, Gismondi Rossella25, Gispert Juan Domingo25, González Elena25, Goovaerts Valerie25, Goulart Denis Mariano25, Grasselli Caroline25, Grau-Rivera Oriol25, Gray Katherine25, Greensmith Martin25, Grozn Laure25, Guillemaud Céline25, Gunn Fiona25, Guntur Ramkumar Prasad25, Hagman Göran25, Hansseuw Bernard25, Heeman Fiona25, Hendriks Janine25, Himmelmann Jakob25, Hitzel Anne25, Hives Florent25, Hoenig Merle25, Hourrègue Claire25, Hudson Justine25, Huguet Jordi25, Ibarria Marta25, Iidow Ifrah25, Indart Sandrine25, Ingala Silvia25, Ivanoiu Adrian25, Jacquemont Charlotte25, Jelic Vesna25, Jessen Frank25, Jiao Jieqing25, Jofresa Sara25, Jonsson Cathrine25, Kaliukhovich Dzmitry25, Kern Silke25, Kivipelto Miia25, Knezevic Iva25, Kuchcinski Grégory25, Laforce Manon25, Lafuente Asunción25, Lala Françoise25, Lammertsma Adriaan25, Lax Michelle25, Lebouvier Thibaud25, Lee Ho-Yun25, Lee Lean25, Leeuwis Annebet25, Lefort Amandine25, Legrand Jean-François25, Leroy Mélanie25, Lesoil Markowski Constance25, Levy Marcel25, Lhommel Renaud25, Lopes Renaud25, Lopes Alves Isadora25, Lorenzini Luigi25, Lorette Adrien25, Luckett Emma25, Lundin Marie25, Mackowiak Marie-Anne25, Malotaux Vincent25, Manber Richard25, Manyakov Nikolay25, Markiewicz Pawel25, Marne Paula25, Marquié Marta25, Martín Elvira25, Martínez Joan25, Martinez Lage Pablo25, Mastenbroek Sophie E25, Maureille Aurélien25, Meersmans Karen25, Mett Anja25, Milne Joseph25, Minguillón Carolina25, Modat Marc25, Molinuevo José Luis25, Montrreal Laura25, Moro Christian25, Müller Theresa25, Muniz Graciela25, Mutsarts Henk Jan25, Nilsson Ted25, Ninerola Aida25, Nordberg Agneta25, Novaes Wilse25, Nuno Carmelo Pires Silva Joao25, Operto Greg25, Orellana Adela25, Ousset Pierre-Jean25, Outteryck Olivier25, Pallardy Amandine25, Palombit Alessandro25, Pancho Ana25, Pappon Martin25, Paquet Claire25, Pariente Jérémie25, Pasquier Florence25, Payoux Pierre25, Peaker Harry25, Pelejà Esther25, Pennetier Delphine25, Pérez-Cordón Alba25, Perissinotti Andrés25, Perrenoud Matthieu Paul25, Petit Sandrine25, Petyt Grégory25, Pfeil Julia25, Pirotte Blanche25, Pla Sandra25, Plaza Wuthrich Sonia25, Poitrine Lea25, Pollet Marianne25, Poncelet Jean-Benoit25, Prior John25, Pruvo Jean-Pierre25, Putallaz Pauline25, Queneau Mathieu25, Quenon Lisa25, Rădoi Andreea25, Rafiq Marie25, Ramage Fiona25, Ramis Maribel25, Reinwald Michael25, Rios Gonzalo25, Ritchie Craig25, Rodriguez Elena25, Rollin Adeline25, Rouaud Olivier25, Sacuiu Simona25, Saint-Aubert Laure25, Sala Arianna25, Salabert Anne-Sophie25, Saldias Jon25, Salvadó Gemma25, Sanabria Angela25, Sannemann Lena25, Sastre Nathalie25, Savina Daniela25, Savitcheva Irina25, Schaeverbeke Jolien25, Scheltens Philip25, Schildermans Carine25, Schmidt Mark25, Schöll Michael25, Schuermans Jeroen25, Semah Franck25, Shekari Mahnaz25, Skoog Ingmar25, Sotolongo-Grau Oscar25, Stephens Andrew25, Stewart Tiffany25, Stutzmann Jennyfer25, Tait Murray25, Tárraga Lluis25, Tartari Juan Pablo25, Tysen-backstrom Ann-christine25, Valero Sergi25, Vallez Garcia David25, van Berckel Bart N M25, van Essen Martijn25, Van Laere Koen25, van Leur Jeroen25, van Maurik Ingrid S25, Vandenberghe Rik25, Vellas Bruno25, Virolinen Jukka25, Visser Pieter Jelle25, Walker Zuzana25, Walles Håkan25, Wallin Emilia25, Whitelaw Grant25, Wimberley Catriona25, Win Zarni25, Wink Alle Meije25, Wolz Robin25, Woodside John25, Yaqub Maqsood25, Zettergren Anna25, Zeyen Philip25,
Affiliation:
1. Laboratory of Neuroimaging of Aging (LANVIE), University of Geneva, Geneva, Switzerland 2. Geneva Memory Center, Geneva University Hospitals, Geneva, Switzerland 3. Division of Clinical Geriatrics, Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Karolinska Institutet, Stockholm/Solna, Sweden 4. Department of Medical Psychology, Amsterdam Public Health Research Institute, Amsterdam University Medical Centers (UMC)–Location VUmc, Amsterdam, the Netherlands 5. Barcelonaßeta Brain Research Center (BBRC), Pasqual Maragall Foundation, Barcelona, Spain 6. IMIM (Hospital del Mar Medical Research Institute), Barcelona, Spain 7. Centro de Investigación Biomédica en Red de Fragilidad y Envejecimiento Saludable (CIBERFES), Madrid, Spain 8. Department of Radiology and Nuclear Medicine, Amsterdam University Medical Centers (UMC)–Location VUmc, Amsterdam, the Netherlands 9. Department of Psychiatry, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany 10. H. Lundbeck A/S, Denmark 11. Centro de Investigación Biomédica en Red Bioingeniería, Biomateriales y Nanomedicina, (CIBER-BBN), Barcelona, Spain 12. Laboratory of Neuroimaging and Innovative Molecular Tracers (NIMTlab), Geneva University Neurocenter and Faculty of Medicine, University of Geneva, Geneva, Switzerland 13. Division of Nuclear Medicine and Molecular Imaging, Geneva University Hospitals, Geneva, Switzerland 14. Center for Biomedical Imaging (CIBM), Geneva, Switzerland 15. Division of Psychiatry, University College London, London, United Kingdom 16. Margaret’s Hospital, Essex Partnership University NHS Foundation Trust, Essex, United Kingdom 17. Division of Neurology, Department of Brain Sciences, Imperial College London, United Kingdom 18. Leenaards Memory Center, Lausanne University Hospital (CHUV), Lausanne, Switzerland 19. Queen Square Institute of Neurology and Centre for Medical Image Computing, University College London, London, United Kingdom 20. Alzheimer Center, Department of Neurology, Amsterdam University Medical Centers (UMC)–Location VUmc, Amsterdam, the Netherlands 21. Life Molecular Imaging, Berlin, Germany 22. GE Healthcare, Amersham, United Kingdom 23. German Center for Neurodegenerative Diseases (DZNE), Bonn-Cologne, Germany 24. Excellence Cluster Cellular Stress Responses in Aging-Related Diseases (CECAD), Medical Faculty, University of Cologne, Germany 25. for the AMYPAD consortium
Abstract
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 < .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 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.
Publisher
American Medical Association (AMA)
Cited by
14 articles.
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