Everyday Functioning in Huntington’s Disease: A Laboratory-Based Study of Financial Management Capacity

Sheppard, David P.; Pirogovsky‐Turk, Eva; Woods, Steven Paul; Holden, H.; Nicoll, Diane R.; Filoteo, J. Vincent; Corey–Bloom, Jody; Gilbert, Paul E.

doi:10.1080/23279095.2015.1125904

Cited by 7 publications

(5 citation statements)

References 32 publications

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“…We found that cognitive dysfunction was associated with a decrease in financial autonomy at all stages of the disease, which is consistent with the wider literature in other neurodegenerative diseases [ 29 ] including a previous smaller study in HD [ 22 ]. Interestingly, the profile of cognitive deficits was different when looking at financial capacity using the TFC or FA.…”

Section: Discussionsupporting

confidence: 91%

“…Only a small number of studies have looked to describe financial capacity in HD or understand its underlying factors. Sheppard et al [ 22 ] reported a study of 20 HD patients which showed that HD patients were impaired compared to controls on the Advanced Finances Test, which requires participants to pay three bills, deposit a check, and pay off as much of a credit card balance as possible, whilst ensuring that at least $100 is left in their account. Performance was found to correlate with cognition, but not with depression.…”

Section: Introductionmentioning

confidence: 99%

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Exploring the predictors of financial impairment in Huntington’s disease using the Enroll-HD dataset

Harris

Mason²,

Barker

2022

J Neurol

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Objectives Huntington’s disease (HD) is a neurodegenerative disease in which cognitive and behavioural symptoms impair the performance of instrumental activities of daily living, including the handling of finances. We sought to determine the prevalence of financial dysfunction in HD, and the demographic and clinical predictors of such impairments. Methods We analysed longitudinal data for pre-manifest gene carriers and HD patients from the Enroll-HD dataset. Financial dysfunction was determined by finance-related items in the Total Functional Capacity (TFC) and Functional Assessment (FA) scales. A binary logistical regression model was used to investigate the predictive value of demographic and clinical factors for the development of financial dysfunction. Results Financial impairment was found to be common in HD gene carriers, and over half required financial assistance within 5 years from diagnosis. Cognitive impairment, apathy, unemployment and disease severity predicted financial dysfunction in manifest patients. For pre-manifest patients, the predictors were proximity to disease onset and depression. Conclusions Loss of financial autonomy is common in HD, and cognitive and psychiatric factors are important in its development. Clinicians must be vigilant to identify patients that may be vulnerable to financial exploitation.

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Section: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

Exploring the predictors of financial impairment in Huntington’s disease using the Enroll-HD dataset

Harris

Mason²,

Barker

2022

J Neurol

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“…Symptoms, such as slowed cognitive processing speed, decline in attention, dysexecutive syndrome and irritability/anger outbursts all affect an individual's ability to work, to drive and to manage a household. These symptoms affect the individual with HD even in the pre-manifest stage, with an increasing prevalence of irritability, apathy and executive dysfunction as the disease progresses [10]. The importance of finding effective treatments is clear from both the perspective of the individual with HD and the caregiver, with both groups feeling the impact of these symptoms.…”

Section: Discussionmentioning

confidence: 99%

Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs

Simpson

Lovecky

Kogan³

et al. 2016

JHD

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Background: In preparation for a meeting with the U.S. Food and Drug Administration (FDA) on Patient-Focused Drug Development in Huntington's disease, the Huntington's Disease Society of America (HDSA) created and distributed two comprehensive surveys on the symptom experience and treatment approaches for Huntington's disease. Objective: The objective of these surveys was to identify the specific symptoms that most impact the daily lives of individuals with Huntington's disease/Juvenile Huntington's disease (HD/JHD) and their caregivers and to solicit input on the types of treatments desired by HD affected families. The data were shared with the FDA to offer background and insight in preparation for the patient-focused meeting, as well as to ensure representation by the community in a manner that would complement those who attended in person. Methods: Two distinct surveys were created using SurveyMonkey to capture patient and caregiver perspectives on HD symptoms and current treatments. HDSA distributed the surveys to the HD community in August and September 2014 and collected responses through January 2015. Results: More than 3,600 responses to the two surveys were received. The data showed that both caregivers and individuals with HD were severely impacted by the cognitive and behavioral symptoms of HD with HD patients reporting problems with executive functioning and cognitive decline as most impactful to them. However, 30 percent of caregivers reported that chorea was the most impactful symptom compared to 17 percent of people with HD. Across all the symptom categories, patients reported a lower occurrence of symptoms than were reported by their caregivers. Conclusions: With only one drug approved for treatment of a symptom of Huntington's disease and no disease modifying treatments available, there is a critical need for new medicines to treat the cognitive, psychiatric and motor symptoms associated with HD. While the surveys did not capture risk/benefit data, the data collected do provide new insights around the different perspectives of patients and caregivers. We believe that industry development of treatments would be well-informed by incorporating the patient community, which is more knowledgeable and engaged than given credit, in consideration of treatment regimens, risk-benefit and priorities for therapeutic development.

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“…Few studies have used or developed performance-based tools to assess everyday functioning in HD. Nicoll et al (2014) used the “Memory for Intentions Screening Test” as a standardized performance-based measure of prospective memory in HD and Sheppard et al (2017) used the “Advanced Finances Test” as a performance-based measure of the participants’ ability to manage finances. Both studies were done in semi-naturalistic settings (real materials and props handled in a laboratory) and resorted to observational methods to infer about the mild-moderate HD patients’ performance level.…”

Section: Introductionmentioning

confidence: 99%

A Novel Ecological Approach Reveals Early Executive Function Impairments in Huntington’s Disease

et al. 2019

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Introduction: Impairments in executive functions are common in neurogenetic disorders such as Huntington’s disease (HD) and are thought to significantly influence the patient’s functional status. Reliable tools with higher ecological validity that can assess and predict the impact of executive dysfunction in daily-life performance are needed. This study aimed to develop and validate a novel non-immersive virtual reality task (“EcoKitchen”) created with the purpose of capturing cognitive and functional changes shown by HD carriers without clinical manifestations of the disease (Premanifest HD), in a more realistic setting. Materials and Methods: We designed a virtual reality task with three blocks of increasing executive load. The performance of three groups (Controls, CTRL; Premanifest HD individuals, HP; Early Manifest HD patients, HD) was compared in four main components of the study protocol: the EcoKitchen; a subjective (self-report) measure – “The Adults and Older Adults Functional Assessment Inventory (IAFAI)”; the “Behavioural Assessment of Dysexecutive Syndrome battery (BADS)”; and a conventional neuropsychological test battery. We also examined statistical associations between EcoKitchen and the other executive, functional and clinical measures used. Results: The HD group showed deficits in all the assessment methods used. In contrast, the HP group was only found to be impaired in the EcoKitchen task, particularly in the most cognitively demanding blocks, where they showed a higher number of errors compared to the CTRL group. Statistically significant correlations were identified between the EcoKitchen, measures of the other assessment tools, and HD clinical features. Discussion: The EcoKitchen task, developed as an ecological executive function assessment tool, was found to be sensitive to early deficits in this domain. Critically, in premanifest HD individuals, it identifies dysfunction prior to symptom onset. Further it adds a potential tool for diagnosis and management of the patients’ real-life problems.

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Everyday Functioning in Huntington’s Disease: A Laboratory-Based Study of Financial Management Capacity

Cited by 7 publications

References 32 publications

Exploring the predictors of financial impairment in Huntington’s disease using the Enroll-HD dataset

Exploring the predictors of financial impairment in Huntington’s disease using the Enroll-HD dataset

Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs

A Novel Ecological Approach Reveals Early Executive Function Impairments in Huntington’s Disease

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