Remote olfactory assessment using the NIH Toolbox Odor Identification test and the brain health registry.

BACKGROUND: Early identification of deficits in our ability to perceive odors is important as many normal (i.e., aging) and pathological (i.e., sinusitis, viral, neurodegeneration) processes can result in diminished olfactory function. To realistically enable population-level measurements of olfaction, validated olfaction tests must be capable of being administered outside the research laboratory and clinical setting. AIM: The purpose of this study was to determine the feasibility of remotely testing olfactory performance using a test that was developed with funding from the National Institutes of Health as part of a ready-to-use, non-proprietary set of measurements useful for epidemiologic studies (NIH Toolbox Odor ID Test). MATERIALS AND METHODS: Eligible participants older than 39 years and active (within 6 months) in the Brain Health Registry (BHR), an online cognitive assessment platform which connects participants with researchers, were recruited for this study. Interested participants were mailed the NIH Toolbox Odor ID Test along with instructions on accessing a website to record their responses. Data obtained from subjects who performed the test at home was compared to the normative data collected when the NIH Toolbox Odor ID Test was administered by a tester in a research setting and validated against the Smell Identification Test. The age-range and composition of the population ensured we had the ability to observe both age-related decline and gender-related deficits in olfactory ability, as shown in the experimental setting. RESULTS: We observed that age-associated olfactory decline and gender-associated performance was comparable to performance on the administered test. Self-administration of this test showed the age-related loss in olfactory acuity, F(4, 1156)=14.564, p<.0001 as well as higher accuracy for women compared to men after controlling for participants' age, F(1, 1160) = 22.953, p <.0001. The effect size calculated as Hedge's g, was 0.41. CONCLUSION: These results indicate that the NIH Toolbox Odor ID Test is an appropriate instrument for self-administered assessment of olfactory performance. The ability to self-administer an inexpensive olfactory test increases its utility for inclusion in longitudinal epidemiological studies and when in-person testing is not feasible.

Development and implementation of an electronic Clinical Dementia Rating and Financial Capacity Instrument-Short Form.

Introduction: To address the need for remote assessments of cognitive decline and dementia, we developed and administered electronic versions of the Clinical Dementia Rating (CDR®) and the Financial Capacity Instrument-Short Form (FCI-SF) (F-CAP®), called the eCDR and eFCI, respectively. Methods: The CDR and FCI-SF were adapted for remote, unsupervised, online use based on item response analysis of the standard instruments. Participants completed the eCDR and eFCI first in clinic, and then at home within 2 weeks. Results: Of the 243 enrolled participants, 179 (73%) cognitively unimpaired (CU), 50 (21%) with mild cognitive impairment (MCI) or dementia, and 14 (6%) with an unknown diagnosis, 84% and 85% of them successfully completed the eCDR and eFCI, respectively, at home. Discussion: These results show initial feasibility in developing and administering online instruments to remotely assess and monitor cognitive decline along the CU to MCI/very mild dementia continuum. Validation is an important next step.

Health-related quality of life in hoarding: A comparison to chronic conditions with high disease burden.

Hoarding disorder often results in debilitating functional impairment and may also compromise health-related quality of life (QoL). This study investigated the association between hoarding behavior and QoL relative to six highly impairing medical and psychiatric disorders in a sample of 20,722 participants enrolled in the internet-based Brain Health Registry. Nearly 1 in 8 participants (12.2%) endorsed clinically relevant hoarding symptoms (CHS). In separate multivariable linear regression models, hoarding was more strongly associated with mental QoL than diabetes (Standardizedß = -0.21, 95% CI: [-0.22, -0.20] vs. -0.01 [-0.02, 0.0]), heart disease (-0.22 [-0.23, -0.20] vs. 0.00 [-0.02, 0.01]), chronic pain (-0.18 [-0.19, -0.16] vs. -0.12 [-0.13, -0.10]), post-traumatic stress disorder (PTSD; -0.20 [-0.22, -0.19] vs. -0.07 [-0.09, -0.06]), and substance use disorder (SUD; -0.21 [-0.23, -0.20] vs. -0.04 [-0.05, -0.03]). Similarly, CHS was more strongly negatively associated with physical QoL than diabetes (-0.11 [-0.10, -0.12] vs. -0.08 [-0.06, -0.09]), major depressive disorder (-0.09 [-0.10, -0.08] vs. -0.05 [-0.06, 0.03]), PTSD (-0.11 [-0.12, -0.10] vs. -0.08 [-0.09, -0.07]), and SUD (-0.12 [-0.13, -0.09] vs. -0.01 [-0.02, 0.00]). Higher hoarding severity was associated with reductions in both mental (Standardizedß = -0.28, ΔR2 = 0.08, p < 0.0001) and physical (ß = -0.12, ΔR2 = 0.02, p < 0.0001) QoL, though the strength of the relationship between hoarding symptoms and QoL varied with depression severity. Efforts to improve the overall QoL and well-being of those with CHS are needed.

Internet-based hoarding assessment: The reliability and predictive validity of the internet-based Hoarding Rating Scale, Self-Report.

The Hoarding Rating Scale, Self Report (HRS-SR) is a 5-item assessment developed to ascertain the presence and severity of hoarding symptoms. This study aimed to evaluate the validity of an online adaptation of the HRS-SR in a remote, unsupervised internet sample of 23,214 members of the Brain Health Registry (BHR), an online research registry that evaluates and longitudinally monitors cognition, medical and psychiatric health status. Convergent validity was assessed among a sub-sample of 1,183 participants who completed additional, remote measures of self-reported hoarding behaviors. Structured clinical interviews conducted in-clinic and via video conferencing tools were conducted among 230 BHR participants; ROC curves were plotted to assess the diagnostic performance of the internet-based HRS-SR using best estimate hoarding disorder (HD) diagnoses as the gold standard. The area under the curve indicated near-perfect model accuracy, and was confirmed with 10-fold cross validation. Sensitivity and specificity for distinguishing clinically relevant hoarding were optimized using an HRS-SR total score cut-off of 5. Longitudinal analyses indicated stability of HRS-SR scores over time. Findings indicate that the internet-based HRS-SR is a useful and valid assessment of hoarding symptoms, though additional research using samples with more diverse hoarding behavior is needed to validate optimal cut-off values.

The Brain Health Registry: An internet-based platform for recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies.

INTRODUCTION: Recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies and clinical trials limit the development of new treatments. Widespread Internet use allows data capture from participants in an unsupervised setting. The Brain Health Registry, a website and online registry, collects data from participants and their study partners. METHODS: The Brain Health Registry obtains self and study partner report questionnaires and neuropsychological data, including the Cogstate Brief Battery, Lumos Labs Neurocognitive Performance Test, and MemTrax Memory Test. Participants provide informed consent before participation. RESULTS: Baseline and longitudinal data were obtained from nearly 57,000 and 28,000 participants, respectively. Over 18,800 participants were referred to, and nearly 1800 were enrolled in, clinical Alzheimer's disease and aging studies, including five observational studies and seven intervention trials. DISCUSSION: Online assessments of participants and study partners provide useful information at relatively low cost for neuroscience studies and clinical trials and may ultimately be used in routine clinical practice.