Huntington Disease
Conditions
Keywords
Huntington's disease, spouse caregiver, quality of life
Brief summary
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.
Interventions
None listed
Sponsors
University Hospital, Lille
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
30 Years to 70 Years
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| report of the experience and interactions of couple and Spouse Caregiver in Huntington's Disease | once time, Baseline | Qualitative assessment: Interpretative phenomenological analysis (IPA) by semi-structured interviews to explore families representations and strategies about the patients with Huntington's Disease |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| report of the experience and interactions of couple and Spouse Caregiver in Huntington's Disease | once time, Baseline | 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 |
Countries
France
Outcome results
None listed