Abstract
Background
Understanding concordance between informants’ and cognitively impaired participants’ information reporting is crucial for Alzheimer’s and Alzheimer’s-related dementia studies.
Methods
The Brain Attack Surveillance in Corpus Christi-Cognitive is a community-based cohort study. Households in Nueces County, Texas, USA, were randomly identified. 330 dyads of participants and their named informants answered questions. Models were generated to examine which predictors, including age, gender, ethnicity, cognitive function, and relationship to informant, influenced answer discordance.
Results
For demographic items, female participants and participants with spouses/partners as informants had significantly less discordance, with incidence rate rations (IRRs) of 0.65 (CI = 0.44, 0.96) and 0.41 (CI = 0.23, 0.75), respectively. For health items, better cognitive function of the participant was associated with less discordance, with an IRR of 0.85 (CI = 0.76, 0.94).
Conclusions
Demographic information concordance is most associated with gender and informant–participant relationship. Level of cognitive function is most associated with concordance for health information.
ClinicalTrials.gov identifier NCT03403257.
Data availability
Reasonable requests for data sharing will be considered by the corresponding author based on IRB approvals and existing data use agreements.
References
Silveira MJ, Given CW, Given B et al (2010) Patient-caregiver concordance in symptom assessment and improvement in outcomes for patients undergoing cancer chemotherapy. Chronic Illn 6:46–56
James HJ, Van Houtven CH, Lippmann S et al (2020) How accurately do patients and their care partners report results of amyloid-β PET scans for Alzheimer's disease assessment? J Alzheimers Dis 74:625–636
Health and Retirement Study (2021) Proxy Selection in the Health and Retirement Study. HRS Methods
Briceño EM, Mehdipanah R, Gonzales X et al (2020) Methods and early recruitment of a community-based study of cognitive impairment among Mexican Americans and non-Hispanic whites: the BASIC-Cognitive study. J Alzheimers Dis 73:185–196
U.S. Census Bureau QuickFacts: Nueces County, Texas, https://www.census.gov/quickfacts/nuecescountytexas, Accessed 5 March, 2023
Nasreddine ZS, Phillips NA, Bédirian V et al (2005) The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc 53:695–699
Katz MJ, Wang C, Nester CO et al (2021) T-MoCA: a valid phone screen for cognitive impairment in diverse community samples. Alzheimers Dement (Amst) 13:e12144
Levine B, Svoboda E, Hay JF et al (2002) Aging and autobiographical memory: dissociating episodic from semantic retrieval. Psychol Aging 17:677
Weir D, Faul J, Langa K (2021) Proxy interviews and bias in the distribution of cognitive abilities due to non-response in longitudinal studies: a comparison of HRS and ELSA. Longit Life Course Stud 2:170–184
Khan N, Garcia N, Mehdipanah R et al (2022) Lack of any caregiving for those with dementia. J Alzheimers Dis 86:531–535
Funding
This study was supported by National Institues of Health, R01NS100687.
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Authors and Affiliations
Contributions
NK, LL-R, SGH, and LBM contributed to writing. LL-R and SGH contributed to data curation and analysis. EB, RM, KL, DL, and LBM contributed to research design, conceptualization, and methodology. NG conducted data collection.
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Conflict of interest
The authors report no competing interests other than funding from academic organizations and the NIH. This work was supported from NIH Grant R01NS100687.
Ethical approval
As per the University of Michigan Institutional Review Board approval, informed consent was provided by the informant for both informant and participants since the participants were by definition cognitively impaired.
Statement of human and animal rights
This project was approved by the University of Michigan IRB.
Informed consent
Caregivers provided informed consent for themselves and the cognitively impaired participants.
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Khan, N., Briceño, E.M., Mehdipanah, R. et al. A community-based study of reporting demographic and clinical information concordance between informants and cognitively impaired participants. Aging Clin Exp Res 35, 1571–1576 (2023). https://doi.org/10.1007/s40520-023-02435-6
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DOI: https://doi.org/10.1007/s40520-023-02435-6