Huntington Disease
Conditions
Keywords
Patient Care Management, Family, Huntington's Disease
Brief summary
The purpose of this study is to identify health management concerns and needs of family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease (HD).
Detailed description
This is an observational study with three phases. In Phase 1, focus groups consisting of family members of persons with HD Gene mutation will be conducted and data collected to be analyzed through content analysis to identify salient themes and key issues. In Phase 2, a survey instrument will be developed and field-tested in order to describe the health care needs, management strategies, and needs for health and social services of relative/significant others of asymptomatic and symptomatic persons with the mutation in the gene for HD. In Phase 3, the survey will be distributed to family members of asymptomatic and symptomatic persons with mutation in the gene for HD and frequencies and comparisons of survey responses according to respondent characteristics will be reported.
Interventions
GENETICMutation in the gene
Sponsors
National Institute of Nursing Research (NINR)
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
* Family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Impact of a positive HD test or presence of HD on a family members perceptions of: health problems, emotional and functional health status, resources/strategies for managing problems, helpfulness, and services needed to help family members cope. | Over 6 yr span |
Secondary
| Measure | Time frame |
|---|---|
| Describe the health care needs, management strategies, and needs for health and social services of a broader sample of relatives/significant others in families in which a person has a gene mutation for HD. | Over 6 yr span |
Countries
United States
Outcome results
None listed