Tolerance for uncertainty and perceived risk among women receiving uninformative<i>BRCA1/2</i>test results

O’Neill, Suzanne C.; DeMarco, Tiffani A.; Peshkin, Beth N.; Rogers, S.; Rispoli, Jessica; Brown, Karen; Valdimarsdottir, Heiðdís; Schwartz, Marc D.

doi:10.1002/ajmg.c.30104

Cited by 64 publications

(73 citation statements)

References 49 publications

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“…For example, women who report feeling uncertain or ambivalent about their inconclusive DNA test result reported higher levels of worry and distress. This is in line with O'Neill et al 10 who reported that women with a higher perceived risk and lower levels of tolerance for ambiguity reported the highest levels of distress 6 months after receiving an inconclusive DNA test result. Moreover, we found that beliefs regarding an inconclusive DNA test result were very strongly related to whether the women had come to terms with their result and their risk status.…”

Section: Discussionsupporting

confidence: 89%

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Putting it all behind: long-term psychological impact of an inconclusive DNA test result for breast cancer

Dijk

Otten

Tollenaar³

et al. 2008

Genetics in Medicine

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Purpose: An inconclusive DNA-result for breast cancer may leave women with uncertainty that cannot be relieved.We assessed the influence of beliefs women held about their inconclusive DNA-result on psychological well-being and whether women had been able to put the period of DNA testing behind them. Methods: In total, 215 women completed a baseline and a follow-up questionnaire 2.5 till 7 years after DNA test disclosure. Within the group of 147 women who received an inconclusive result (either a personal result or the result of an affected family member) multiple regression analyses were applied to investigate the relevance of women's personal beliefs.Results: Personal beliefs and ambivalence about an inconclusive DNA-result were associated with cancer-related worry and distress (P Ͻ 0.05). Moreover, these beliefs seemed to be an especially strong predictor of whether women had been able to leave the period of DNA testing behind them, even after controlling for all measures of psychological distress (P Ͻ 0.001). Discussion: Psychological distress measures may provide an important but incomplete picture of how women make sense of an inconclusive DNA-result. These findings underscore the importance of discussing counselees' beliefs and expectations openly to enhance well-being and adaptation on the long term. Genet Med 2008:10(10):745-750. Key Words: Genetic testing, inconclusive result, breast cancer, psychological, distressSince the identification of the BRCA1 and BRCA2 genes, many individuals have requested genetic testing for hereditary breast and ovarian cancer. From meta-analytic studies we now know that BRCA mutation testing does not, on the whole, lead to high levels of distress. 1,2 These studies were based on women from families in which a BRCA mutation had been detected previously and who were offered informative testing. However, the majority of women receive an uninformative or inconclusive result, that is, a negative result in the absence of a mutation detected previously within the family. Because of the limitations of current genetic technology genetic susceptibility cannot be ruled out, and because of the possibility of deleterious mutations in as yet unidentified genes, these women remain at increased risk of developing breast cancer on the basis of the pedigree-based risk assessment.Usually, women's DNA-samples are preserved for possible future testing using new technological advances. The inconclusiveness of the result may make it hard to regard this as a closed chapter and adapt to a somewhat uncertain risk status. In other words, it may be important to know whether women can put the period of genetic testing behind them, and whether they can cope with the ongoing uncertainty about their cancer risk and the risk for their female relatives.This may be even more applicable to unaffected women who have asked an affected relative to take the test on their behalf. It may be very unsatisfactory if this relative receives an inconclusive test result, particularly when multiple cases of cancer have bee...

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Section: Discussionsupporting

confidence: 89%

“…10 ⅐ No. 10 Theory, which postulates that both cognitive representations and emotional processes are important in coming to terms with (the threat of) illness. [12][13][14] Moreover, as personal beliefs are modifiable, clinicians' may address these beliefs to enhance psychological well-being.…”

Section: Long-term Impact Of An Inconclusive Dna Test Resultsmentioning

confidence: 99%

Putting it all behind: long-term psychological impact of an inconclusive DNA test result for breast cancer

Dijk

Otten

Tollenaar³

et al. 2008

Genetics in Medicine

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“…The psychometric properties of an English version of this construct have been characterized recently-the Intolerance for Uncertainty scale (IUS) [35]. One study has reported on the association of responses for the IUS with patients' reactions to uninformative genetic test results for hereditary breast cancer risk [36]. Intolerance for uncertainty was positively associated with distress.…”

Section: Discussionmentioning

confidence: 99%

Tolerance for ambiguity could influence awareness of breast cancer genetic testing and inform health education

Quillin

Silberg

Jones

et al. 2008

Cancer Causes Control

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“…Four theoretical models were used to guide the identified studies; (a) The Theory of Genetic Vulnerability: A Roy Model Exemplar [9] (b) the Biopsychosocial Model for Genetics [10] (c) Baum's Model of Stress and coping [11], and (d) the Theory of Reasoned Action [12].…”

Section: Conceptual/theoretical Modelsmentioning

confidence: 99%

Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science

Crotser¹,

Boehmke

2009

J Cancer Surviv

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Survivorship concerns were multidimensional and included issues related to risk reduction procedures, psychological and emotional impacts, and impact on family and social relationships. Many adults experience temporary distress after receipt of positive BRCA1/2 testing. Usually the distress is not clinically significant, however support is desired from health professionals, others who have a BRCA1/2 mutation, and family as decisions are made regarding screening and risk-reducing options. Social relationships are impacted as information is communicated to family members. Limitations of the current state of the science, opportunities to build evidence for the future and implications for nursing practice and education are identified.

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Tolerance for uncertainty and perceived risk among women receiving uninformativeBRCA1/2test results

Cited by 64 publications

References 49 publications

Putting it all behind: long-term psychological impact of an inconclusive DNA test result for breast cancer

Putting it all behind: long-term psychological impact of an inconclusive DNA test result for breast cancer

Tolerance for ambiguity could influence awareness of breast cancer genetic testing and inform health education

Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science

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