Quality of Life
Conditions
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.
Interventions
OTHERinterview
interview
Sponsors
University Hospital, Angers
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 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 |
Outcome results
None listed