Caregiver Burden in Huntington's Disease

Study Overview
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Brief Summary
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Huntington's disease (HD) is a rare inherited neurodegenerative disorder, progressing between 15 and 20 years and affecting one person out of 10.000. In France, it concerns some 6.000 patients symptomatic and 12 000 asymptomatic carriers. Few extensive researches have been conducted on the progression of the disease, which is defined in the literature in 5 stages in a functional approach. Therapeutically, no cure for HD is currently validated but only symptomatic treatments. There's various treatment options: medicated, humans (physiotherapy, speech therapist, occupational therapist, ..). Although these treatment options do not prevent the progression of the disease, their combination associated with a stimulating environment may slow the decline of physical, intellectual and psychic abilities of patients. In social terms, patients with HD require sustained support, especially in cases of family isolation. The behavioural, gaiting and eating disorder as well as the communications difficulties make it difficult support daily for the entourage. The caregivers are sometimes dealing with untenable situations. Home care services, which are crucial to alleviating dependency, relieve family caregivers but are for the most severe patient. Moreover, the justified placement decision in an institution generates a feeling of guilt for the family. The caregiver is the person who brings non-professional assistance , partly or wholly , to a dependent member of his entourage , for the activities of daily living. This regular care may be provided permanently or not. It can take many forms, such as , care , nursing , support to education and social life , administrative procedures , psychological support . Caregivers have their lives profoundly reshaped. They are often forced to give up some of their habits , give up their future plans , change their relationships. The commitment of caregivers with patients with Huntington's disease actually sounds on their mental and physical health, as well as their social and professional life Very few studies have been conducted to measure the difficulties and implications of these caregivers.

Official Title
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Assessment Study on Family Burden in Overall Care of Patient With Huntington Disease

Conditions
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Caregiver of Huntington's Disease Patient

Intervention / Treatment
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* Other: ZARIT Burden Interview


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria Age ≥ 18 Primary caregiver of patient with Huntington's disease Non- institutionalized Patient stage 1-4 (no institutionalization within 2 years) written consent Exclusion Criteria - Not agreement

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Design Details

Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Other: Caregiver Evaluation<br>ZARIT Burden Interview | Other: ZARIT Burden Interview<br>* ZARIT Burden Interview completed Day 0 and 1 year<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Evaluation with ZARIT's scale of the burden level of the management of a patient with Huntington's disease by his caregiver |  | 1 year | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Measuring social impact of the disease using the under score of ZARIT's scale for the patient and the caregiver |  | 1 year | 
| Measuring professional impact of of the disease using the under score of ZARIT's scale for the patient and the caregiver |  | 1 year | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Huntington's disease, Caregiver, ZARIT burden scale