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

NCT04411238 | Unknown

• 1 other identifier: 2020/28
• Study Type: observational
• Target: 90
• Locations: 0 countries
• Sites: N/A

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

Outcome Measures

Primary Outcomes (1)

• 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

Study Arms (3)

Patients

Other: interview

Caregivers

Other: interview

Home help

Other: interview

Interventions

interview OTHER

interview

Caregivers; Home help; Patients

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

90 participants, including 30 cases with Huntington's disease, 30 caregivers not concerned himself with the risk of developing the disease and 30 home helper worker for Huntington's disease patients.

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.

Contact the study team to discuss eligibility requirements. They can help determine if this study is right for you.

Sponsors & Collaborators

• University Hospital, Angers: lead

MeSH Terms

Interventions

Interviews as Topic

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER GOV
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 18, 2020
• First Posted: June 2, 2020
• Study Start: June 1, 2020
• Primary Completion: June 1, 2020
• Study Completion: June 1, 2022
• Last Updated: June 2, 2020

Record last verified: 2020-05