Impact of Apathy on Caregiving in HD. Version 1

Huntington Disease Clinical Trial

Official title:

A Qualitative Exploration of the Impact of Apathy on the Caregiving Relationship in the Context of Huntington's Disease

Clinical Trial Details — Status: Enrolling by invitation

Administrative data

• NCT number: NCT05913154
• Other study ID #: 319976
• Status: Enrolling by invitation
• Start date: April 26, 2023
• Est. completion date: December 2023

Study information

• Verified date: March 2023
• Source: University of East Anglia
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial Summary

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.

Recruitment information / eligibility

• Status: Enrolling by invitation
• Enrollment: 20
• Est. completion date: December 2023
• Est. primary completion date: December 2023
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years to 100 Years

Eligibility

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.

Related Conditions & MeSH terms

• Huntington Disease

Locations

Country	Name	City	State
United Kingdom	University of East Anglia	Norwich	Norfole

Sponsors (2)

Lead Sponsor	Collaborator
University of East Anglia	University of Cambridge

Country where clinical trial is conducted

United Kingdom, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Themes	Synthesised themes generated from the the qualitative interviews with companions	1 day (Outcomes will be measured once, at the time of the interview)