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

University Hospital, Angers

Status

Unknown

Conditions

Quality of Life

Treatments

Other: interview

Study type

Observational

Funder types

Other

Identifiers

NCT04411238

2020/28

Details and patient eligibility

About

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.

Enrollment

90 estimated patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

Inclusion and exclusion 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 :