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Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset
A C DudokdeWit1, A Tibben, H J Duivenvoorden
1Department of Medical Psychology, Erasmus University Rotterdam, The Netherlands.
Insights
Psychological distress varies in individuals undergoing predictive DNA testing for late-onset disorders. Those at risk for neurodegenerative diseases like Huntington's disease (HD) reported more avoidance than cancer risk groups, impacting pre-test counseling strategies.
Area of Science:
- Medical Genetics
- Psychology
- Public Health
Background:
- Predictive DNA testing for late-onset disorders is increasingly common.
- Understanding pre-test psychological distress is crucial for patient support.
- Previous research has not comprehensively compared distress across different genetic disorder risk groups.
Purpose of the Study:
- To compare pre-test psychological distress levels in individuals at risk for different late-onset disorders.
- To identify factors associated with higher distress levels.
- To inform pre-test genetic counseling practices.
Main Methods:
- Comparative study assessing psychological distress (Intrusion and Avoidance subscales of the Impact of Event Scale).
- Participants included individuals at risk for Huntington's disease (HD), cerebral haemorrhage (HCHWA-D), breast and ovarian cancer (HBOC), and polyposis coli (FAP).
- Partners of at-risk individuals also participated.
Main Results:
- Individuals at risk for neurodegenerative disorders (HD, HCHWA-D) reported higher avoidance than those at risk for cancer syndromes (HBOC, FAP).
- Lower intrusion was reported by FAP at-risk individuals and partners of HBOC at-risk individuals.
- Higher distress correlated with greater disease experience in relatives, perceived disease impact, concerns about testing, and expectations of adverse effects or relief.
Conclusions:
- Pre-test psychological distress profiles differ based on the type of late-onset disorder.
- High distress may indicate worry and preparation, while low distress could suggest denial or poor anticipation.
- Genetic counseling should acknowledge and address varying distress levels and coping mechanisms.
Abstract:
In a comparative study on the effects of predictive DNA testing for late onset disorders, pre-test psychological distress was assessed in people at risk for Huntington's disease (HD, n = 41), cerebral haemorrhage (HCHWA-D, n = 9), breast and ovarian cancer (HBOC, n = 24), and polyposis coli (FAP, n = 45). Partners, if available, also participated in the study. Distress was measured with the subscales Intrusion and Avoidance of the Impact of Event Scale. People at risk for the neurodegenerative disorders reported more avoidance than those at risk for the cancer syndromes. People at risk for FAP and partners of those at risk for HBOC reported less intrusion than the others at risk and the other partners. Subjects who were more distressed reported more experiences with the disease in close relatives, the disease having a great impact on their lives, having considerations against predictive testing, expecting that being identified as a gene carrier would have adverse effects, and expecting relief after being identified as a non-carrier. Test candidates who expected an increase of personal problems showed higher avoidance, whereas those who could better anticipate future life as a carrier had higher intrusion levels. Generally, subjects with high distress levels are of more concern to the healthcare professional than those with low distress levels. However, high distress may reflect worrying as a mental preparation for the test result, whereas low distress may indicate denial-avoidance behaviour and poor anticipation of the test outcome. In pre-test counselling sessions, this should be acknowledged and addressed.