Impact of Apathy on Caregiving in HD. Version 1

NCT ID: NCT05913154

Last Updated: 2023-06-22

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Total Enrollment

20 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-04-26

Study Completion Date

2023-12-31

Brief Summary

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Huntington's disease (HD) can affect motivation. People with HD may not wash often, keep their house clean and tidy, or eating healthy food. This loss of motivation, or apathy, can also affect the way they talk to people and how willing they are to be in social situations.

There are thought to be four different subtypes of apathy. These include reduced (1) motivation for planning and organising, (2) emotional reactions, (3) thoughts and actions and (4) social interaction.

It is clear from talking to patients and their families in clinic that apathy has a big impact. It is often a source of distress for the people around the patient, who are trying to support and care for them. We know from previous research, that having good social support helps people with Huntington's disease to live independently for longer. This research aims to understand the ways in which apathy can impact the levels of burden felt by caregivers of people with HD.

Caregivers will be asked to take part in a single interview. They will be asked questions about caring for someone with apathy. There will also be the opportunity to share their own first-hand experiences. These interviews will be analysed for common themes using framework analysis. Attention will be given to the relationship between burden and the different types of apathy.

Understanding the factors that lead to increased caregiver burden is the first step towards finding way to support caregivers of people with HD.

Detailed Description

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Conditions

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Huntington Disease

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Cognitive/executive apathy

No interventions assigned to this group

Behavioural/inhibition apathy

No interventions assigned to this group

Emotional apathy

No interventions assigned to this group

Social apathy

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

Participants will be included in the study if:

* They hold significant caring responsibilities for someone with clinically manifest HD
* The person they care for scores above the abnormality cut-off determined for HD on one or more subscale of the Dimensional Apathy Scale - Companion version, or the proposed clinical cut-off for the Apathy Motivational Index - Companion.
* They are 18 years or older and able to give valid, informed consent for study participation.

Exclusion Criteria

Individuals will be excluded from the study is they:

* Have a lack of spoken English, sufficient to affect their understanding of the interview questions or compromise their ability to express their opinions.
* Did not consent to the interview being recorded.
Minimum Eligible Age

18 Years

Maximum Eligible Age

100 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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University of Cambridge

OTHER

Sponsor Role collaborator

University of East Anglia

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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University of East Anglia

Norwich, Norfole, United Kingdom

Site Status

Countries

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United Kingdom

Other Identifiers

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319976

Identifier Type: -

Identifier Source: org_study_id

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