TY - JOUR
T1 - Everyday Functioning in a Community-Based Volunteer Population
T2 - Differences Between Participant- and Study Partner-Report
AU - Verrijp, Merike
AU - Dubbelman, Mark A.
AU - Visser, Leonie N.C.
AU - Jutten, Roos J.
AU - Nijhuis, Elke W.
AU - Zwan, Marissa D.
AU - van Hout, Hein P.J.
AU - Scheltens, Philip
AU - van der Flier, Wiesje M.
AU - Sikkes, Sietske A.M.
N1 - Funding Information: LV was supported by a fellowship grant received from Alzheimer Nederland (WE.15-2019-05) and recipient of ABOARD, which is a public-private partnership receiving funding from ZonMW (#73305095007) and Health Holland, Topsector Life Sciences & Health (PPP-allowance; #LSHM20106). All funding is paid to the institution. WF has received funding from NWO, EU-FP7, EU-JPND, Alzheimer Nederland, CardioVascularOnderzoek Nederland, stichting Dioraphte, Gieskes-Strijbis fund, stichting Equilibrio, Pasman stichting, Biogen MA Inc., Boehringer Ingelheim, Life-MI, AVID, Roche BV, Fujifilm, and Combinostics. WF holds the Pasman chair, has performed contract research for Biogen MA Inc., and Boehringer Ingelheim, is a consultant to Oxford Health Policy Forum CIC, Roche, and Biogen MA Inc., and has been an invited speaker at Boehringer Ingelheim, Biogen MA Inc., Danone, Eisai, and WebMD Neurology (Medscape). All funding is paid to her institution. PS has acquired grant support (for the institution; Alzheimer Center Amsterdam) from GE Healthcare, Danone Research, Piramal, and MERCK. In the past 2 years, he has received consultancy/speaker fees (paid to the institution) from Lilly, GE Healthcare, Novartis, Sanofi, Nutricia, Probiodrug, Biogen, Roche, Avraham, and EIP Pharma. SS has received funding from Health Holland, Topsector Life Sciences & Health (Grant Nos. LSHM19051 and LSHM20084), and ZonMW (Grant Nos. #7330502051 and #73305095008) and has received consultancy fees from Biogen, Lundbeck, Boehringer, and Toyama and license fees for use of Amsterdam IADL Questionnaire from Green Valley, VtV Therapeutics, Alzheon, Vivoryon, Roche, Neuroscience, Janssen, Medavante, and Genentech. All funds are paid to her institution. The other authors have no relevant disclosures. Publisher Copyright: Copyright © 2022 Verrijp, Dubbelman, Visser, Jutten, Nijhuis, Zwan, van Hout, Scheltens, van der Flier and Sikkes.
PY - 2022/1/5
Y1 - 2022/1/5
N2 - Introduction: Impaired awareness in dementia caused by Alzheimer’s disease and related disorders made study partner-report the preferred method of measuring interference in “instrumental activities of daily living” (IADL). However, with a shifting focus toward earlier disease stages and prevention, the question arises whether self-report might be equally or even more appropriate. The aim of this study was to investigate how participant- and study partner-report IADL perform in a community-based volunteer population without dementia and which factors relate to differences between participant- and study partner-report. Methods: Participants (N = 3,288; 18–97 years, 70.4% females) and their study partners (N = 1,213; 18–88 years, 45.8% females) were recruited from the Dutch Brain Research Registry. IADL were measured using the Amsterdam IADL Questionnaire. The concordance between participant- and study partner-reported IADL difficulties was examined using intraclass correlation coefficient (ICC). Multinomial logistic regressions were used to investigate which demographic, cognitive, and psychosocial factors related to participant and study partner differences, by looking at the over- and underreport of IADL difficulties by the participant, relative to their study partner. Results: Most A-IADL-Q scores represented no difficulties for both participants (87.9%) and study partners (89.4%). The concordance between participants and study partners was moderate (ICC = 0.55, 95% confidence interval [CI] = [0.51, 0.59]); 24.5% (N = 297) of participants overreported their IADL difficulties compared with study partners, and 17.8% (N = 216) underreported difficulties. The presence of depressive symptoms (odds ratio [OR] = 1.31, 95% CI = [1.12, 1.54]), as well as memory complaints (OR = 2.45, 95% CI = [1.80, 3.34]), increased the odds of participants overreporting their IADL difficulties. Higher IADL ratings decreased the odds of participant underreport (OR = 0.71, 95% CI = [0.67, 0.74]). Conclusion: In this sample of community-based volunteers, most participants and study partners reported no major IADL difficulties. Differences between participant and study partner were, however, quite prevalent, with subjective factors indicative of increased report of IADL difficulties by the participant in particular. These findings suggest that self- and study partner-report measures may not be interchangeable, and that the level of awareness needs to be considered, even in cognitively healthy individuals.
AB - Introduction: Impaired awareness in dementia caused by Alzheimer’s disease and related disorders made study partner-report the preferred method of measuring interference in “instrumental activities of daily living” (IADL). However, with a shifting focus toward earlier disease stages and prevention, the question arises whether self-report might be equally or even more appropriate. The aim of this study was to investigate how participant- and study partner-report IADL perform in a community-based volunteer population without dementia and which factors relate to differences between participant- and study partner-report. Methods: Participants (N = 3,288; 18–97 years, 70.4% females) and their study partners (N = 1,213; 18–88 years, 45.8% females) were recruited from the Dutch Brain Research Registry. IADL were measured using the Amsterdam IADL Questionnaire. The concordance between participant- and study partner-reported IADL difficulties was examined using intraclass correlation coefficient (ICC). Multinomial logistic regressions were used to investigate which demographic, cognitive, and psychosocial factors related to participant and study partner differences, by looking at the over- and underreport of IADL difficulties by the participant, relative to their study partner. Results: Most A-IADL-Q scores represented no difficulties for both participants (87.9%) and study partners (89.4%). The concordance between participants and study partners was moderate (ICC = 0.55, 95% confidence interval [CI] = [0.51, 0.59]); 24.5% (N = 297) of participants overreported their IADL difficulties compared with study partners, and 17.8% (N = 216) underreported difficulties. The presence of depressive symptoms (odds ratio [OR] = 1.31, 95% CI = [1.12, 1.54]), as well as memory complaints (OR = 2.45, 95% CI = [1.80, 3.34]), increased the odds of participants overreporting their IADL difficulties. Higher IADL ratings decreased the odds of participant underreport (OR = 0.71, 95% CI = [0.67, 0.74]). Conclusion: In this sample of community-based volunteers, most participants and study partners reported no major IADL difficulties. Differences between participant and study partner were, however, quite prevalent, with subjective factors indicative of increased report of IADL difficulties by the participant in particular. These findings suggest that self- and study partner-report measures may not be interchangeable, and that the level of awareness needs to be considered, even in cognitively healthy individuals.
KW - Alzheimer’s disease
KW - aging
KW - awareness
KW - dementia
KW - instrumental activities of daily living
KW - preclinical
KW - self report measures
KW - study partner-reported outcomes
UR - http://www.scopus.com/inward/record.url?scp=85123115103&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85123115103&partnerID=8YFLogxK
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UR - https://www.ncbi.nlm.nih.gov/pubmed/35069172
U2 - https://doi.org/10.3389/fnagi.2021.761932
DO - https://doi.org/10.3389/fnagi.2021.761932
M3 - Article
C2 - 35069172
SN - 1663-4365
VL - 13
JO - Frontiers in aging neuroscience
JF - Frontiers in aging neuroscience
M1 - 761932
ER -