Objective: Objective: To compare patient and caregiver report of cognitive, motoric, and psychiatric symptoms versus objective performance measures in patients with Huntington’s disease (HD).

Background: Background: Anosognosia is a lack of insight or awareness of symptoms or deficits. Individuals with HD commonly experience anosognosia; therefore, it is important to examine the accuracy of self-report of symptoms by HD patients with those of their caregivers by comparing their responses with quantitative assessments.

Method: Methods: The Anosognosia Scale (AS) (Deckel & Morrison,1996) was given to 29 manifest HD patients and their caregivers. The AS consists of 8 questions in which individuals are asked to rate their physical, emotional, and cognitive abilities relative to their same-aged peers. Scores range from very impaired to excellent on a 5-point Likert scale. Caregivers and patients scores were then correlated individually with objective measures of cognitive, motoric, and psychiatric processes. All correlations were Pearson correlations.

Results: Results: Caregivers’ AS item scores were highly correlated with objective measures of walking (Unified Huntington Disease Rating Scale (UHDRS) tandem walking score [r=.55, p=.013]vs. patient [r=.41, p=.075]); dexterity (UHDRS finger tapping score [r=.62, p=.004]vs. patient [r=.32, p=.223]); speech (UHDRS dysarthria score [r=.58, p=.005]vs. patient [r=.05, p=.819]); memory (MoCA delayed recall score [r=-.51, p=.022]vs. patient [r=-.14, p=.963]); and attention (Trails Making Test A score [r=.65, p=.009] vs. patient [r=.37, p=.064]). There was a trend toward significance in caregivers’ ratings of word retrieval (category fluency ([r=-.63, p=.054]vs. patient [r=.010, p=1.00]). Patients’ scores, on the other hand, were more highly correlated with an objective measure of psychiatric symptoms (Problem Behaviors Assessment-Short Version (PBA-s) [r=.64, p=.004]vs. caregiver [r=.48, p=.133]).

Conclusion: Conclusions: These results suggest that caregivers may be better able to rate HD patients’ cognitive and motor abilities than patients themselves given potential levels of patient anosognosia. This greatly impacts the validity of self-report outcome measures in HD research and suggests that caregiver reports may be more useful in observational and interventional studies.

References: Deckel, A. W., & Morrison, D. (1996). Evidence of a neurologically based “denial of illness” in patients with Huntington’s disease. Archives of Clinical Neuropsychology, 11(4), 295-302.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/anosognosia-in-hd-comparison-of-self-report-and-caregiver-ratings-with-objective-performance-measures/