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

NCT ID: NCT04411238

Last Updated: 2020-06-02

Basic Information

• Recruitment Status: UNKNOWN
• Total Enrollment: 90 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2020-06-30
• Study Completion Date: 2022-06-30

Brief 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.

Conditions

Quality of Life

Study Design

• Observational Model Type: OTHER
• Study Time Perspective: PROSPECTIVE

Study Groups

Patients

interview

Intervention Type: OTHER

interview

Caregivers

interview

Intervention Type: OTHER

interview

Home help

interview

Intervention Type: OTHER

interview

Interventions

interview

interview

Intervention Type: OTHER

Eligibility Criteria

Inclusion Criteria

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.

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

University Hospital, Angers

OTHER_GOV

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Other Identifiers

2020/28

Identifier Type: -

Identifier Source: org_study_id