Couple and Spouse Caregiver in Huntington's Disease

University Hospital, Lille48 enrolled

Overview

The objectives are to better document the psychosocial status and needs of caregiver of HD patients and understand the dyad functioning, facing the disease at various stages.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Huntington Disease

Eligibility

Sex: ALLMin age: 30 YearsMax age: 70 YearsHealthy volunteers:

Medical Language ↔ Plain English

Inclusion Criteria: For patient : * HD, CAG \> 36, motor UHDRS \> 5 * Being able to communicate with the investigator For both spouses : * Living together since at least 5 years * 30 to 60 years old Exclusion Criteria: For patient : \- Other chronic neurologic disorder For both spouses : * Psychiatric disease * Unable to participate, incl read, understand and sign the informed consent

Locations (1)

Hôpital Roger Salengro, CHU Lille

Lille, France

Outcomes

Primary Outcomes

report of the experience and interactions of couple and Spouse Caregiver in Huntington's Disease

Qualitative assessment: Interpretative phenomenological analysis (IPA) by semi-structured interviews to explore families representations and strategies about the patients with Huntington's Disease

Time frame: once time, Baseline

Secondary Outcomes

report of the experience and interactions of couple and Spouse Caregiver in Huntington's Disease

Qualitative assessment : Thematic analysis by COAT (Carers Outcome Agreement Tool) during a semi-structured interviews to explore families representations and strategies about the patients with Huntington's Disease

Time frame: once time, Baseline

Data from ClinicalTrials.gov

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