The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations

被引:20
作者
Nosheny, Rachel L. [1 ,2 ]
Amariglio, Rebecca [3 ]
Sikkes, Sietske A. M. [4 ,5 ]
Van Hulle, Carol [6 ]
Camargos Bicalho, Maria Aparecida [7 ]
Dowling, N. Maritza [8 ]
Dozzi Brucki, Sonia Maria [9 ]
Ismail, Zahinoor [10 ,11 ]
Kasuga, Kensaku [12 ]
Kuhn, Elizabeth [13 ]
Numbers, Katya [14 ]
Aaronson, Anna [2 ]
Moretti, Davide Vito [15 ]
Pereiro, Arturo X. [16 ]
Sanchez-Benavides, Gonzalo [17 ]
Sellek Rodriguez, Allis F. [18 ]
Urwyler, Prabitha [19 ]
Zawaly, Kristina [20 ]
机构
[1] Univ Calif San Francisco, Dept Psychiat, San Francisco, CA USA
[2] Vet Adm Adv Res Ctr, San Francisco, CA USA
[3] Harvard Med Sch, Dept Neurol, Ctr Alzheimer Res & Treatment, Brigham & Womens Hosp,Massachusetts Gen Hosp, Boston, MA 02115 USA
[4] Amsterdam Univ Med Ctr, Alzheimer Ctr Amsterdam, Dept Neurol, North Holland, Netherlands
[5] Vrije Univ Amsterdam, Dept Clin Neuro & Dev Psychol, North Holland, Netherlands
[6] Univ Wisconsin, Wisconsin Alzheimers Dis Res Ctr, Madison, WI USA
[7] UFMG Fed Univ Minas Gerais, Jenny de Andrade Fari Ctr Geriatr & Gerontol UFMG, Dept Clin Med, Belo Horizonte, MG, Brazil
[8] George Washington Univ, Milken Inst Sch Publ Hlth, Dept Epidemiol & Biostat, Dept Acute & Chron Care,Sch Nursing, Washington, DC USA
[9] Univ Sao Paulo, Grp Cognit & Behav Neurol, Sao Paulo, Brazil
[10] Univ Calgary, Cumming Sch Med, Hotch Kiss Brain Inst, Calgary, AB, Canada
[11] Univ Calgary, Cumming Sch Med, OBrien Inst Publ Hlth, Calgary, AB, Canada
[12] Niigata Univ, Brain Res Inst, Dept Mol Genet, Niigata, Japan
[13] Normandie Univ, Inst Blood & Brain Caen Normandie, PhIND Physiopathol & Imaging Neurol Disorders, INSERM,UNICAEN, Caen, France
[14] Univ New South Wales, Ctr Hlth Brain Ageing CHeBA, Dept Psychiat, Sydney, NSW, Australia
[15] IRCCS Ist Ctr San Giovanni di Dio Fatebenefratell, Alzheimer Rehabil Operat Unit, Brescia, Italy
[16] Univ Santiago de Compostela, Fac Psychol, Dept Dev Psychol, Galicia, Spain
[17] Barcelona Beta Brain Res Ctr, Barcelona, Spain
[18] Costa Rican Fdn Care Older Adults Alzheimers & Ot, Cartago, Costa Rica
[19] Univ Bern, Univ Neurorehabil Unit, ARTORG Ctr Biomed Engn, Dept Neurol,Inselspital, Bern, Switzerland
[20] Univ Auckland, Fac Med & Hlth Sci, Sch Populat Hlth, Dept Gen Practice & Primary Hlth Care, Auckland, New Zealand
基金
美国国家卫生研究院;
关键词
activities of daily living; Alzheimer's disease; informant-reported outcomes; mild cognitive impairment; study partner-reported outcomes; subjective cognitive decline; PRECLINICAL ALZHEIMERS-DISEASE; MEMORY COMPLAINTS; NEUROPSYCHIATRIC SYMPTOMS; INSTRUMENTAL ACTIVITIES; AMYLOID DEPOSITION; INFORMANT REPORTS; EVERYDAY FUNCTION; OLDER-ADULTS; MILD; IMPAIRMENT;
D O I
10.1002/trc2.12357
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Efficient identification of cognitive decline and Alzheimer's disease (AD) risk in early stages of the AD disease continuum is a critical unmet need. Subjective cognitive decline is increasingly recognized as an early symptomatic stage of AD. Dyadic cognitive report, including subjective cognitive complaints (SCC) from a participant and an informant/study partner who knows the participant well, represents an accurate, reliable, and efficient source of data for assessing risk. However, the separate and combined contributions of self- and study partner report, and the dynamic relationship between the two, remains unclear. The Subjective Cognitive Decline Professional Interest Area within the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment convened a working group focused on dyadic patterns of subjective report. Group members identified aspects of dyadic-report information important to the AD research field, gaps in knowledge, and recommendations. By reviewing existing data on this topic, we found evidence that dyadic measures are associated with objective measures of cognition and provide unique information in preclinical and prodromal AD about disease stage and progression and AD biomarker status. External factors including dyad (participant-study partner pair) relationship and sociocultural factors contribute to these associations. We recommend greater dyad report use in research settings to identify AD risk. Priority areas for future research include (1) elucidation of the contributions of demographic and sociocultural factors, dyad type, and dyad relationship to dyad report; (2) exploration of agreement and discordance between self- and study partner report across the AD syndromic and disease continuum; (3) identification of domains (e.g., memory, executive function, neuropsychiatric) that predict AD risk outcomes and differentiate cognitive impairment due to AD from other impairment; (4) development of best practices for study partner engagement; (5) exploration of study partner report as AD clinical trial endpoints; (6) continued development, validation, and optimization, of study partner report instruments tailored to the goals of the research and population.
引用
收藏
页数:12
相关论文
共 125 条
[11]   Region-Specific Association of Subjective Cognitive Decline With Tauopathy Independent of Global β-Amyloid Burden [J].
Buckley, Rachel F. ;
Hanseeuw, Bernard ;
Schultz, Aaron P. ;
Vannini, Patrizia ;
Aghjayan, Sarah L. ;
Properzi, Michael J. ;
Jackson, Jonathan D. ;
Mormino, Elizabeth C. ;
Rentz, Dorene M. ;
Sperling, Reisa A. ;
Johnson, Keith A. ;
Amariglio, Rebecca E. .
JAMA NEUROLOGY, 2017, 74 (12) :1455-1463
[12]   Phenomenological Characterization of Memory Complaints in Preclinical and Prodromal Alzheimer's Disease [J].
Buckley, Rachel F. ;
Ellis, Kathryn A. ;
Ames, David ;
Rowe, Christopher C. ;
Lautenschlager, Nicola T. ;
Maruff, Paul ;
Villemagne, Victor L. ;
Macaulay, S. Lance ;
Szoeke, Cassandra ;
Martins, Ralph N. ;
Masters, Colin L. ;
Savage, Greg ;
Rainey-Smith, Stephanie R. ;
Rembach, Alan ;
Saling, Michael M. .
NEUROPSYCHOLOGY, 2015, 29 (04) :571-581
[13]   Accuracy of collateral source reports in very mild to mild dementia of the Alzheimer type [J].
Cacchione, PZ ;
Powlishta, KK ;
Grant, EA ;
Buckles, VD ;
Morris, JC .
JOURNAL OF THE AMERICAN GERIATRICS SOCIETY, 2003, 51 (06) :819-823
[14]   Awareness of Cognitive Decline in Patients With Alzheimer's Disease: A Systematic Review and Meta-Analysis [J].
Cacciamani, Federica ;
Houot, Marion ;
Gagliardi, Geoffroy ;
Dubois, Bruno ;
Sikkes, Sietske ;
Sanchez-Benavides, Gonzalo ;
Denicolo, Elena ;
Molinuevo, Jose Luis ;
Vannini, Patrizia ;
Epelbaum, Stephane .
FRONTIERS IN AGING NEUROSCIENCE, 2021, 13
[15]   Awareness of cognitive decline trajectories in asymptomatic individuals at risk for AD [J].
Cacciamani, Federica ;
Sambati, Luisa ;
Houot, Marion ;
Habert, Marie-Odile ;
Dubois, Bruno ;
Epelbaum, Stephane .
ALZHEIMERS RESEARCH & THERAPY, 2020, 12 (01)
[16]   Low Cognitive Awareness, but Not Complaint, is a Good Marker of Preclinical Alzheimer's Disease [J].
Cacciamani, Federica ;
Tandetnik, Caroline ;
Gagliardi, Geoffroy ;
Bertin, Hugo ;
Habert, Marie-Odile ;
Hampel, Harald ;
Boukadida, Laurie ;
Revillon, Marie ;
Epelbaum, Stephane ;
Dubois, Bruno .
JOURNAL OF ALZHEIMERS DISEASE, 2017, 59 (02) :753-762
[17]   The value of informant versus individual's complaints of memory impairment in early dementia [J].
Carr, DB ;
Gray, S ;
Baty, J ;
Morris, JC .
NEUROLOGY, 2000, 55 (11) :1724-1726
[18]   Why are Spousal Caregivers More Prevalent than Nonspousal Caregivers as Study Partners in AD Dementia Clinical Trials? [J].
Cary, Mark S. ;
Rubright, Jonathan D. ;
Grill, Joshua D. ;
Karlawish, Jason .
ALZHEIMER DISEASE & ASSOCIATED DISORDERS, 2015, 29 (01) :70-74
[19]   Subjective cognitive decline: Self and informant comparisons [J].
Caselli, Richard J. ;
Chen, Kewei ;
Locke, Dona E. C. ;
Lee, Wendy ;
Roontiva, Auttawut ;
Bandy, Dan ;
Fleisher, Adam S. ;
Reiman, Eric M. .
ALZHEIMERS & DEMENTIA, 2014, 10 (01) :93-98
[20]   Examining the Pathways Between Self-Awareness and Well-Being in Mild to Moderate Alzheimer Disease [J].
Cines, Sarah ;
Farrell, Meagan ;
Steffener, Jason ;
Sullo, Liz ;
Huey, Edward ;
Karlawish, Jason ;
Cosentino, Stephanie .
AMERICAN JOURNAL OF GERIATRIC PSYCHIATRY, 2015, 23 (12) :1297-1306