Caregiver Burden in Huntington's Disease (PHRI-HD)
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|ClinicalTrials.gov Identifier: NCT02876445|
Recruitment Status : Completed
First Posted : August 23, 2016
Last Update Posted : August 23, 2016
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.
|Condition or disease||Intervention/treatment||Phase|
|Caregiver of Huntington's Disease Patient||Other: ZARIT Burden Interview||Not Applicable|
|Study Type :||Interventional (Clinical Trial)|
|Actual Enrollment :||179 participants|
|Intervention Model:||Single Group Assignment|
|Masking:||None (Open Label)|
|Official Title:||Assessment Study on Family Burden in Overall Care of Patient With Huntington Disease|
|Study Start Date :||March 2011|
|Actual Primary Completion Date :||March 2016|
|Actual Study Completion Date :||March 2016|
ZARIT Burden Interview
Other: ZARIT Burden Interview
ZARIT Burden Interview completed Day 0 and 1 year
- Evaluation with ZARIT's scale of the burden level of the management of a patient with Huntington's disease by his caregiver [ Time Frame: 1 year ]
- Measuring social impact of the disease using the under score of ZARIT's scale for the patient and the caregiver [ Time Frame: 1 year ]
- Measuring professional impact of of the disease using the under score of ZARIT's scale for the patient and the caregiver [ Time Frame: 1 year ]
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02876445
|Henri Mondor Hospital|
|Creteil, France, 94010|
|Principal Investigator:||Marie-Laure BOURHIS, Senior Health Manager||Assistance Publique - Hôpitaux de Paris|