Family Health After Predictive Huntington Disease (HD) Testing
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).
|Official Title:||Family Health After Predictive Huntington Disease Testing|
- 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. [ Time Frame: Over 6 yr span ] [ Designated as safety issue: No ]
- 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. [ Time Frame: Over 6 yr span ] [ Designated as safety issue: No ]
|Study Start Date:||September 2001|
|Study Completion Date:||October 2008|
|Primary Completion Date:||October 2008 (Final data collection date for primary outcome measure)|
All Participants hav a family member with Huntington Disease
|Genetic: Mutation in the gene|
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.
|United States, Iowa|
|The University of Iowa College of Nursing|
|Iowa City, Iowa, United States, 52242|
|Principal Investigator:||Janet K Williams, PhD, RN, FAAN||University of Iowa|