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Participant-Informant Relationships Affect Quality of Life Ratings in Incipient and Clinical Alzheimer Disease.

ABSTRACT: Clinical trials in incipient and clinical Alzheimer disease (AD) often include informant-reported outcomes. Whereas informant reports in AD dementia may be modulated by the nature of participant-informant relationships, whether informant type affects reporting at earlier disease stages is less certain. We sought to determine the effects of participant-informant relationships on informant assessments of quality of life (QOL), functional abilities, and behavioral symptoms in individuals with normal cognition (NC), mild cognitive impairment (MCI), and mild-to-moderate AD dementia.Cross-sectional.Easton Center for Alzheimer Disease Research at the University of California, Los Angeles.A total of 399 individuals who met criteria for NC (N?=?100), MCI [amnestic (N?=?125) and nonamnestic (N?=?61)], and AD (N?=?113). Participants were subdivided into groups based on informant-participant relationships (spouse versus other).We examined informant effects on the Quality of Life-Alzheimer's Disease (QOL-AD) scale, the Functional Activities Questionnaire (FAQ), and the Neuropsychiatric Inventory (NPI).After adjustments for demographic and cognitive factors, spouse informants reported higher participant QOL in the amnestic MCI and AD groups than did other informants. No informant effects were seen on QOL-AD ratings in the nonamnestic MCI or NC groups or on the FAQ or NPI in the MCI and AD groups.Participant-informant relationships may modulate informant responses on subjective measures such as the QOL-AD in both incipient and clinical AD. Clinical trials that use informant measures may need to address these effects.

SUBMITTER: Lin A

PROVIDER: S-EPMC5316499 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature

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Participant-Informant Relationships Affect Quality of Life Ratings in Incipient and Clinical Alzheimer Disease.

Lin Amy A Brook Jenny J Grill Joshua D JD Teng Edmond E

The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry 20161013 3

<h4>Objective</h4>Clinical trials in incipient and clinical Alzheimer disease (AD) often include informant-reported outcomes. Whereas informant reports in AD dementia may be modulated by the nature of participant-informant relationships, whether informant type affects reporting at earlier disease stages is less certain. We sought to determine the effects of participant-informant relationships on informant assessments of quality of life (QOL), functional abilities, and behavioral symptoms in indi ...[more]

PMID: 27818119

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Project description:OBJECTIVE:To demonstrate challenges in the estimation of change in quality of life (QOL). METHODS:Data were taken from a completed clinical trial with negative results. Responses to 13 QOL items were obtained 12 months apart from 258 persons with Alzheimer's disease (AD) participating in a randomized, placebo-controlled clinical trial with two treatment arms. Two analyses to estimate whether "change" in QOL occurred over 12 months are described. A simple difference (later - earlier) was calculated from total scores (standard approach). A Qualified Change algorithm (novel approach) was applied to each item: differences in ratings were classified as either: improved, worsened, stayed poor, or stayed "positive" (fair, good, excellent). The strengths of evidence supporting a claim that "QOL changed", derived from the two analyses, were compared by considering plausible alternative explanations for, and interpretations of, results obtained under each approach. RESULTS:Total score approach: QOL total scores decreased, on average, in the two treatment (both -1.0, p < 0.05), but not the placebo (=-0.59, p > 0.3) groups. Qualified change approach: Roughly 60% of all change in QOL items was worsening in every arm; 17% - 42% of all subjects experienced change in each item. CONCLUSIONS:Totalling the subjective QOL item ratings collapses over items, and suggests a potentially misleading "overall" level of change (or no change, as in the placebo arm). Leaving the items as individual components of "quality" of life they were intended to capture, and qualifying the direction and amount of change in each, suggests that at least 17% of any group experienced change on every item, with 60% of all observed change being worsening. DISCUSSION:Summarizing QOL item ratings as a total "score" collapses over the face-valid, multi-dimensional components of the construct "quality of life". Qualified Change provides robust evidence of changes to QOL or "enhancements of" life quality.

Project description:Background and objectivesStudies are sparse regarding the association between the informant-reported subjective memory decline (informant report) and Alzheimer disease (AD) biomarkers. This study thus aimed at determining the clinical relevance of the informant report throughout the AD clinical continuum, by assessing its specific relationships with amyloid deposition, cognition, and neurodegeneration.MethodsParticipants from the Imagerie Multimodale de la maladie d'Alzheimer à un stade Précoce (IMAP+) primary cohort and the Alzheimer Disease Neuroimaging Initiative (ADNI) replication cohort were included; all underwent multimodal neuroimaging and neuropsychological assessments. Follow-up data of IMAP+ participants over up to 36 months were also used for longitudinal analyses. The informant report was measured with the Cognitive Difficulties Scale (IMAP+) and Everyday Cognition (ADNI). General linear models were used to assess the cross-sectional associations between the informant report and amyloid-PET, cognitive performances, and neurodegeneration (atrophy and hypometabolism) in Alzheimer signature areas; while longitudinal links were assessed in IMAP+ with linear mixed-effects models.ResultsA total of 110 IMAP+ participants were included, including 32 cognitively unimpaired older individuals (controls, age: 70.91 ± 6.57 years, female: 50%), 25 patients with subjective cognitive decline (SCD, 65.88 ± 6.64, 40%), 35 with mild cognitive impairment (MCI, 72.49 ± 7.5, 34%), and 18 with Alzheimer-type dementia (AD dementia, 68.17 ± 8.59, 28%). Seven hundred thirty-one ADNI participants were included, including 157 controls (74.21 ± 5.95, 55%), 84 with SCD (72.00 ± 5.41, 63%), 369 with MCI (71.84 ± 7.4, 44%), and 121 with AD dementia (74.29 ± 7.75, 40%). In IMAP+, a higher informant report strongly correlated to greater amyloid-PET, specifically in patients with MCI (β = 0.48, p = 0.003), and to lower cognitive performance in patients with SCD (global cognition, β = -0.41, p = 0.04) and MCI (memory, β = -0.37, p = 0.03). Findings in patients with MCI were replicated in the ADNI (amyloid-PET, β = 0.25, p < 0.001; memory, β = -0.22, p < 0.001) and extended to neurodegeneration in AD signature areas (β = -0.2, p < 0.001). Longitudinal analyses in IMAP+ showed links with global cognitive decline over time in patients with MCI (estimate -0.74, SE 0.26, p = 0.005) and SCD (estimate -0.36, SE 0.26, p = 0.02) where a higher baseline informant report also predicted an increased amyloid-PET over time (estimate 0.008, SE 0.003, p = 0.02).DiscussionAltogether, our findings suggest that the informant report is particularly relevant in patients with MCI where it strongly relates to higher amyloid-PET, indicative of impairment due to AD.Trial registration informationClinicalTrials.gov Identifier: NCT01638949.

Project description:Judgments of music performance quality are commonly employed in music practice, education, and research. However, previous studies have demonstrated the limited reliability of such judgments, and there is now evidence that extraneous visual, social, and other "non-musical" features can unduly influence them. The present study employed continuous measurement techniques to examine how the process of forming a music quality judgment is affected by the manipulation of temporally specific visual cues. Video footage comprising an appropriate stage entrance and error-free performance served as the standard condition (Video 1). This footage was manipulated to provide four additional conditions, each identical save for a single variation: an inappropriate stage entrance (Video 2); the presence of an aural performance error midway through the piece (Video 3); the same error accompanied by a negative facial reaction by the performer (Video 4); the facial reaction with no corresponding aural error (Video 5). The participants were 53 musicians and 52 non-musicians (N = 105) who individually assessed the performance quality of one of the five randomly assigned videos via a digital continuous measurement interface and headphones. The results showed that participants viewing the "inappropriate" stage entrance made judgments significantly more quickly than those viewing the "appropriate" entrance, and while the poor entrance caused significantly lower initial scores among those with musical training, the effect did not persist long into the performance. The aural error caused an immediate drop in quality judgments that persisted to a lower final score only when accompanied by the frustrated facial expression from the pianist; the performance error alone caused a temporary drop only in the musicians' ratings, and the negative facial reaction alone caused no reaction regardless of participants' musical experience. These findings demonstrate the importance of visual information in forming evaluative and aesthetic judgments in musical contexts and highlight how visual cues dynamically influence those judgments over time.

Dataset Information

Participant-Informant Relationships Affect Quality of Life Ratings in Incipient and Clinical Alzheimer Disease.

Publications

Participant-Informant Relationships Affect Quality of Life Ratings in Incipient and Clinical Alzheimer Disease.

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