Ignite Creation Date:
2024-05-05 @ 4:44 PM
Last Modification Date:
2024-10-26 @ 9:23 AM
Study NCT ID:
NCT00300820
Status:
COMPLETED
Last Update Posted:
2017-07-02
First Post:
2006-03-08
Brief Title:
Perspectives of Individuals With Bipolar Disorder and Siblings of Individuals With Bipolar Disorder A Telephone Interview Study
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
Seeking Genetic Counseling What Motivates Families At Risk For Psychiatric Illness
Status:
COMPLETED
Status Verified Date:
2008-02-06
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
This study will examine those who will seek and those who are most likely to benefit from genetic counseling for psychiatric disorders It will identify themes related to perceived risks benefits and possible motivations for seeking genetic counseling among families affected by bipolar disorder It will then use those themes to generate a starting point for a framework to guide further research and to improve genetics services as they are currently practiced
Adults with bipolar disorder and the adult siblings of people with bipolar disorder are eligible for this study In a 60- to 90-minute telephone interview participants are asked questions related to their thoughts about the causes of bipolar disorder their experiences with the illness their concerns about the disorder occurring again in their families and their feelings about the value of discussing these issues with health care professionals They also are asked questions about the mental health of their close family members and their own mental health
Adults with bipolar disorder and the adult siblings of people with bipolar disorder are eligible for this study In a 60- to 90-minute telephone interview participants are asked questions related to their thoughts about the causes of bipolar disorder their experiences with the illness their concerns about the disorder occurring again in their families and their feelings about the value of discussing these issues with health care professionals They also are asked questions about the mental health of their close family members and their own mental health
Detailed Description:
This study aims to examine through the use of qualitative telephone interviews who will seek and who is most likely to benefit from genetic counseling for psychiatric disorders The specific aims are to identify themes related to perceived risks benefits and possible motivations for seeking genetic counseling among families affected by bipolar disorder to use those themes to generate a starting point for a conceptual framework to guide further research and to use those themes to improve clinical genetics services currently in practice
None of the few available studies on genetics and bipolar disorder evaluate interest in genetic services in the absence of genetic testing eg family-history-based risk assessment education about etiology psychological support even though those elements will continue to be relevant even if genetic testing becomes available Only one study asked any questions about psychiatric genetic counseling in the absence of testing-a study on schizophrenia in which one such question was posed In most of the available literature the focus is on highly predictive testing scenarios that are not relevant in current practice and may never be relevant In addition most studies test the researchers preconceived notions of risks and benefits without allowing participant input More research will facilitate the integration of genetic counseling for psychiatric disorders into the genetics clinic
This is a qualitative study using telephone interviews that will be taped and transcribed We plan to interview 15 to 25 adults affected with bipolar disorder and 15 to 25 unaffected adult siblings We will use a semi-structured interview guide that will allow the integration of new elements and the modification of existing elements We will use data reduction and coding to synthesize the most important themes
This study will result in themes that can be tested in a larger more representative sample allowing us to test hypotheses about interest in psychiatric genetic counseling This study also will provide preliminary data about anticipating through the use of realistic scenarios the point at which individuals are more likely to embrace psychiatric genetic counseling and beginning to understand in a broader perspective what may increase or decrease interest in genetic counseling and risk assessment based on family history for complex disorders More immediately this study will provide a description of the experience of living with risk in the family that should be of interest to genetics professionals
None of the few available studies on genetics and bipolar disorder evaluate interest in genetic services in the absence of genetic testing eg family-history-based risk assessment education about etiology psychological support even though those elements will continue to be relevant even if genetic testing becomes available Only one study asked any questions about psychiatric genetic counseling in the absence of testing-a study on schizophrenia in which one such question was posed In most of the available literature the focus is on highly predictive testing scenarios that are not relevant in current practice and may never be relevant In addition most studies test the researchers preconceived notions of risks and benefits without allowing participant input More research will facilitate the integration of genetic counseling for psychiatric disorders into the genetics clinic
This is a qualitative study using telephone interviews that will be taped and transcribed We plan to interview 15 to 25 adults affected with bipolar disorder and 15 to 25 unaffected adult siblings We will use a semi-structured interview guide that will allow the integration of new elements and the modification of existing elements We will use data reduction and coding to synthesize the most important themes
This study will result in themes that can be tested in a larger more representative sample allowing us to test hypotheses about interest in psychiatric genetic counseling This study also will provide preliminary data about anticipating through the use of realistic scenarios the point at which individuals are more likely to embrace psychiatric genetic counseling and beginning to understand in a broader perspective what may increase or decrease interest in genetic counseling and risk assessment based on family history for complex disorders More immediately this study will provide a description of the experience of living with risk in the family that should be of interest to genetics professionals
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 06-HG-0108 | None | None | None |