Caregiver Burden in Huntington's Disease

NCT02876445 | Completed

• 1 other identifier: NI10059
• Study Type: interventional
• Target: 179
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Caregiver of Huntington's Disease Patient

Keywords

Huntington's disease; Caregiver; ZARIT burden scale

Outcome Measures

Primary Outcomes (1)

• 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 Outcomes (2)

• 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

Study Arms (1)

Caregiver Evaluation

OTHER

ZARIT Burden Interview

Other: ZARIT Burden Interview

Interventions

ZARIT Burden Interview OTHER

ZARIT Burden Interview completed Day 0 and 1 year

Caregiver Evaluation

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Age ≥ 18
• Primary caregiver of patient with Huntington's disease
• Non- institutionalized Patient
• stage 1-4 (no institutionalization within 2 years)
• written consent

You may not qualify if:

• \- Not agreement

Sponsors & Collaborators

• Assistance Publique - Hôpitaux de Paris: lead

Study Sites (1)

Henri Mondor Hospital

Créteil, 94010, France

Location

Related Publications (1)

• Youssov K, Audureau E, Vandendriessche H, Morgado G, Layese R, Goizet C, Verny C, Bourhis ML, Bachoud-Levi AC. The burden of Huntington's disease: A prospective longitudinal study of patient/caregiver pairs. Parkinsonism Relat Disord. 2022 Oct;103:77-84. doi: 10.1016/j.parkreldis.2022.08.023. Epub 2022 Aug 24.

  PMID: 36084356 DERIVED

MeSH Terms

Conditions

Huntington Disease

Condition Hierarchy (Ancestors)

Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Dementia; Chorea; Dyskinesias; Movement Disorders; Heredodegenerative Disorders, Nervous System; Neurodegenerative Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Cognition Disorders; Neurocognitive Disorders; Mental Disorders

Study Officials

• Marie-Laure BOURHIS, Senior Health Manager

  Assistance Publique - Hôpitaux de Paris

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 31, 2016
• First Posted: August 23, 2016
• Study Start: March 1, 2011
• Primary Completion: March 1, 2016
• Study Completion: March 1, 2016
• Last Updated: August 23, 2016

Record last verified: 2016-07

Locations

FR (1)