Skills of Home Helpers for a Better Quality of Life for Adults With Huntington's Disease Living at Home

Quality of Life Clinical Trial

— COMPQUAHD  

Official title:

Skills of Home Helpers for a Better Quality of Life for Adults With Huntington's Disease Living at Home

Clinical Trial Details — Status: Not yet recruiting

Administrative data

• NCT number: NCT04411238
• Other study ID #: 2020/28
• Status: Not yet recruiting
• Start date: June 2020
• Est. completion date: June 2022

Study information

• Verified date: May 2020
• Source: University Hospital, Angers
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial Summary

Huntington's disease often brings together 3 types of symptoms at one time or another of the disease during its evolution: motor, cognitive and psychiatric. Management requires comprehensive and multidisciplinary health, social or medico-social support. Its development generates additional difficulties for professionals who very often qualify this disease as "very complex" because it leads to a deep and severe impairment of physical and intellectual capacities. The sick person gradually loses their autonomy and becomes dependent for the acts of daily life, hence the choice of this disease for our study. Our study is focused on the quality of life at home of patients followed by the Angers Reference Center, "expert" on neurogenetic pathologies.

Studies focusing on patients' quality of life at home have so far never been undertaken for a rare neurodegenerative disease like Huntington's disease.

Recruitment information / eligibility

• Status: Not yet recruiting
• Enrollment: 90
• Est. completion date: June 2022
• Est. primary completion date: June 2020
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

Selection Criteria:

Patient group :

• Genetic diagnosis of Huntington's disease

• Symptomatic patient

• Patient living at home

• Person able to carry out the interviews provided for in the study

Caregiver group :

• Person, defined within the meaning of the CNSA (National Solidarity Fund for Autonomy) as a natural caregiver, not concerned himself by the risk of developing the disease

• person able to carry out the interviews provided for in the study

Home Helper group :

• Professionals working at home with Huntington's disease patients employed by home help service providers.

Related Conditions & MeSH terms

• Huntington Disease
• Quality of Life

Intervention

Other:
• interview
interview

Locations

Country	Name	City	State
n/a

Sponsors (1)

Lead Sponsor	Collaborator
University Hospital, Angers

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Identify and compare the expectations and needs of patients with Huntington's disease, their caregivers, and home helpers, in terms of home support, based on interviews		One day