Behavioural Problems in Huntington Disease : Analysis and Enhancement of Caregiver and Patient Experience

University Hospital, Angers12 enrolled

Overview

The study hypothesis is that caregivers experience allows them to develop a lot of knowledge and know-how about behavioural problems in Huntington Disease and its consequences. The purpose of this study is to collect, describe and analyse caregivers experience in order to find and enhance their knowledge related to the adaptation to behavioural problems of Huntington Disease patients.

Study Type

INTERVENTIONAL

Allocation

NON_RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

Conditions

Huntington Disease

Interventions

questionnaire qualilty of lifeBEHAVIORAL

psychological interviewBEHAVIORAL

psychological testsBEHAVIORAL

Motor evaluationOTHER

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

Inclusion Criteria: * For patients: * Patients with Huntington Disease declared * Huntington Disease diagnosed with abnormal number of CAG repeats: 38 \< nucleotide expansion (CAG) * Total Functional Capacity ≥ 7 * Patients living with a caregiver * Aged 18 years and above * Subject gave its written consent * For caregivers : * No risk of caregiver having Huntington disease * Aged 18 years and above * Subject gave its written consent Exclusion Criteria: * For patients: * Patient who do not live with a caregiver * No national health insurance affiliation * Being under guardianship * For caregivers : * Caregiver at risk for Huntington Disease * No national health insurance affiliation * Being under guardianship

Locations (1)

University Hospital of Angers

Angers, Maine Et Loire, France

Outcomes

Primary Outcomes

The Huntington's Disease health-related Quality of Life questionnaire

The primary outcome is to find a list of caregiver competences necessary to prevent and adapt to behavioural problems of Huntington Disease patients.

Time frame: Baseline

Data from ClinicalTrials.gov

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