The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations
Abstract 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 subjecti...
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| Format: | Article |
| Language: | English |
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Wiley
2022-01-01
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| Series: | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/trc2.12357 |
| _version_ | 1797949027135782912 |
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| author | Rachel L. Nosheny Rebecca Amariglio Sietske A.M. Sikkes Carol Van Hulle Maria Aparecida Camargos Bicalho N. Maritza Dowling Sonia Maria Dozzi Brucki Zahinoor Ismail Kensaku Kasuga Elizabeth Kuhn Katya Numbers Anna Aaronson Davide Vito Moretti Arturo X. Pereiro Gonzalo Sánchez‐Benavides Allis F. Sellek Rodríguez Prabitha Urwyler Kristina Zawaly for the Dyadic Patterns of Subjective Report working group within the Subjective Cognitive Decline Professional Interest Area, Alzheimer's Association ISTAART |
| author_facet | Rachel L. Nosheny Rebecca Amariglio Sietske A.M. Sikkes Carol Van Hulle Maria Aparecida Camargos Bicalho N. Maritza Dowling Sonia Maria Dozzi Brucki Zahinoor Ismail Kensaku Kasuga Elizabeth Kuhn Katya Numbers Anna Aaronson Davide Vito Moretti Arturo X. Pereiro Gonzalo Sánchez‐Benavides Allis F. Sellek Rodríguez Prabitha Urwyler Kristina Zawaly for the Dyadic Patterns of Subjective Report working group within the Subjective Cognitive Decline Professional Interest Area, Alzheimer's Association ISTAART |
| author_sort | Rachel L. Nosheny |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-04-10T21:52:51Z |
| format | Article |
| id | doaj.art-fc457a539fc1449baa20799aec9cd502 |
| institution | Directory Open Access Journal |
| issn | 2352-8737 |
| language | English |
| last_indexed | 2024-04-10T21:52:51Z |
| publishDate | 2022-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| spelling | doaj.art-fc457a539fc1449baa20799aec9cd5022023-01-18T11:41:04ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372022-01-0181n/an/a10.1002/trc2.12357The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendationsRachel L. Nosheny0Rebecca Amariglio1Sietske A.M. Sikkes2Carol Van Hulle3Maria Aparecida Camargos Bicalho4N. Maritza Dowling5Sonia Maria Dozzi Brucki6Zahinoor Ismail7Kensaku Kasuga8Elizabeth Kuhn9Katya Numbers10Anna Aaronson11Davide Vito Moretti12Arturo X. Pereiro13Gonzalo Sánchez‐Benavides14Allis F. Sellek Rodríguez15Prabitha Urwyler16Kristina Zawaly17for the Dyadic Patterns of Subjective Report working group within the Subjective Cognitive Decline Professional Interest Area, Alzheimer's Association ISTAARTUniversity of California San Francisco Department of Psychiatry San Francisco California USACenter for Alzheimer Research and Treatment Department of Neurology Brigham and Women's Hospital Department of Neurology Massachusetts General Hospital Harvard Medical School Boston Massachusetts USAAmsterdam University Medical Centers Department of Neurology Alzheimer Center Amsterdam North Holland the Netherlands/VU University Department of Clinical Neuro & Development Psychology North Holland the NetherlandsWisconsin Alzheimer's Disease Research Center University of Wisconsin‐Madison Madison Wisconsin USAUFMG: Federal University of Minas Gerais Department of Clinical Medicine Jenny de Andrade Faria – Center for Geriatrics and Gerontology of UFMG Belo Horizonte BrazilGeorge Washington University Department of Acute & Chronic Care School of Nursing Department of Epidemiology & Biostatistics Milken Institute School of Public Health Washington District of Columbia USAGroup of Cognitive and Behavioral Neurology – University of São Paulo São Paulo BrazilHotchkiss Brain Institute and O'Brien Institute for Public Health Cumming School of Medicine University of Calgary Calgary Alberta CanadaDepartment of Molecular Genetics Brain Research Institute Niigata University Niigata JapanUNICAEN, INSERM, PhIND “Physiopathology and Imaging of Neurological Disorders,” Institut Blood and Brain @ Caen‐Normandie Normandie University Caen FranceCentre for Healthy Brain Ageing (CHeBA) Department of Psychiatry University of New South Wales Sydney New South Wales AustraliaVeteran's Administration Advanced Research Center San Francisco California USAIRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli Alzheimer Rehabilitation Operative Unit Brescia ItalyFaculty of Psychology Department of Developmental Psychology University of Santiago de Compostela Galicia SpainBarcelona Beta Brain Research Center Barcelona SpainCosta Rican Foundation for the Care of Older Adults with Alzheimer's and Other Dementias (FundAlzheimer Costa Rica) Cartago Costa RicaARTORG Center for Biomedical Engineering University of Bern University Neurorehabilitation Unit Department of Neurology Inselspital Bern SwitzerlandUniversity of Auckland Department of General Practice and Primary Health Care School of Population Health Faculty of Medical and Health Sciences Auckland New ZealandAbstract 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.https://doi.org/10.1002/trc2.12357activities of daily livingAlzheimer's diseaseinformant‐reported outcomesmild cognitive impairmentstudy partner–reported outcomessubjective cognitive decline |
| spellingShingle | Rachel L. Nosheny Rebecca Amariglio Sietske A.M. Sikkes Carol Van Hulle Maria Aparecida Camargos Bicalho N. Maritza Dowling Sonia Maria Dozzi Brucki Zahinoor Ismail Kensaku Kasuga Elizabeth Kuhn Katya Numbers Anna Aaronson Davide Vito Moretti Arturo X. Pereiro Gonzalo Sánchez‐Benavides Allis F. Sellek Rodríguez Prabitha Urwyler Kristina Zawaly for the Dyadic Patterns of Subjective Report working group within the Subjective Cognitive Decline Professional Interest Area, Alzheimer's Association ISTAART The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations Alzheimer’s & Dementia: Translational Research & Clinical Interventions activities of daily living Alzheimer's disease informant‐reported outcomes mild cognitive impairment study partner–reported outcomes subjective cognitive decline |
| title | The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations |
| title_full | The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations |
| title_fullStr | The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations |
| title_full_unstemmed | The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations |
| title_short | The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations |
| title_sort | role of dyadic cognitive report and subjective cognitive decline in early adrd clinical research and trials current knowledge gaps and recommendations |
| topic | activities of daily living Alzheimer's disease informant‐reported outcomes mild cognitive impairment study partner–reported outcomes subjective cognitive decline |
| url | https://doi.org/10.1002/trc2.12357 |
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