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Predictive testing for Huntington's disease: relationship with partners after testing
M Decruyenaere1, G Evers-Kiebooms, T Cloostermans
1Psychosocial Genetics Unit, University of Leuven-Herestraat, Leuven, Belgium. marleen.decruyenaere@med.kuleuven.ac.be
Clinical Genetics
|March 23, 2004
Summary
Five years after a Huntington
Area of Science:
- Genetics
- Psychology
- Sociology
Background:
- Huntington's disease (HD) is a neurodegenerative disorder with a predictive genetic test.
- The long-term impact of predictive testing on relationships is not well understood.
Purpose of the Study:
- To examine the effects of predictive Huntington's disease testing on partner relationships 5 years post-testing.
- To assess changes in marital status, relationship quality, and perceived relationship dynamics.
Main Methods:
- Qualitative and quantitative research methods were employed.
- Study participants included individuals who underwent predictive testing for Huntington's disease (carriers and non-carriers) and their partners.
Main Results:
- Approximately 70% of individuals maintained their marital status 5 years after testing.
- Huntington's disease carriers reported higher relationship quality and more positive perceived changes compared to their partners.
- Qualitative data revealed that altered roles post-testing can cause significant marital distress and impact couple dynamics.
Conclusions:
- Predictive testing for Huntington's disease can influence relationship dynamics, with carriers and partners experiencing differing perceptions of relationship quality.
- Open communication and pre- and post-test counseling are crucial for managing the psychosocial impact on relationships.