Clinical Characteristics Affect the Impact of an Uninformative DNA Test Result: The Course of Worry and Distress Experienced by Women Who Apply for Genetic Testing for Breast Cancer

Dijk, S. van; Timmermans, Daniëlle R. M.; Meijers-Heijboer, Hanne; Tibben, Aad; Asperen, Christi J. van; Otten, W.

doi:10.1200/jco.2005.03.7259

Cited by 86 publications

(94 citation statements)

References 18 publications

(8 reference statements)

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“…In fact, distress levels decreased from before to after testing more among individuals for whom reducing uncertainty was an important motive for wanting a predictive HNPCC test [30]. Furthermore, uninformative results in genetic testing for breast and ovarian cancer genes resulted in higher anxiety and depression than positive results [31], and in less reassurance than negative results [32]. In our study, we expected mutation status (unequivocal positive and negative results and indeterminate results) to effect reactions to HNPCC testing above and beyond personal cancer history.…”

Section: Introduction and Aimmentioning

confidence: 99%

Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study

et al. 2008

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Section: Introduction and Aimmentioning

confidence: 99%

Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study

et al. 2008

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“…about psychological distress. Mean age and mean education level seem to be a little higher than in previous studies in our center [21]. We have addressed these limitations in an ongoing nationwide prospective and retrospective study with control groups, validated measures and the inclusion of relatives.…”

Section: Limitations and Conclusionmentioning

confidence: 99%

“…exclusion of a known familial mutation), but less distress than those who received a certain positive result (a pathogenic mutation) [17][18][19][20][21]. In two studies, uncertain positive results (UV) did not seem to cause more psychological distress than a certain DNA result [22,23].…”

Section: The Genetic-uncertainty-causes-distress Hypothesismentioning

confidence: 99%

“…Firstly, other variables should be included, such as demographics, family history and cancer history [21,30,31], coping style and personality [30,[32][33][34], illness perception [35,36], and family communication [37]. Secondly, the question could be raised whether current general distress measures are sensitive enough to measure the subtle impact of DNA results on the various life domains of the counsellees.…”

Section: The Genetic-uncertainty-causes-distress Hypothesismentioning

confidence: 99%

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The counsellees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life

et al. 2008

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Objective: Unclassified variants (UVs, variants of uncertain clinical significance) are found in 13% of all BRCA1/2 mutation analyses. Little is known about the counsellees' recall and interpretation of a UV, and its psychosocial/medical impact.Method: Retrospective semi-structured interviews with open questions and five-point Likert scales were carried out in 24 counsellees who received a UV result 3 years before (sd ¼ 1:9).Results: Sixty-seven percent (16/24) recalled the UV result as a non-informative DNA result; 29% recalled a pathogenic result. However, 79% of all counsellees interpreted the UV result as a genetic predisposition for cancer. Variations in recall and interpretation were unexplained by demographics, cancer history of themselves and relatives, and communication aspects of UV disclosure. Sixty-seven percent perceived genetic counselling as completed, whereas 71% expected to receive new DNA information. Although most counsellees reported that UV disclosure had changed their lives in general little, one in three counsellees reported large changes in specific life domains, especially in surveillance behavior and medical decisions. Ten out of 19 participants who interpreted the UV as pathogenic had undergone preventive surgery against none of the 5 counsellees who interpreted the UV as non-informative.Conclusion: Counsellors and researchers need to address discrepancies between the counsellees' factual recall and their subjective interpretation of non-informative BRCA1/2-test results.

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“…The larger percentage of unaffected counselees in the WM did thus not explain the higher worry of WM counselees. Indeed, studies within Dutch centres reported similar pre-visit cancer worry and knowledge for affected and unaffected counselees (Van Dijk et al 2006;Pieterse et al 2011). Importantly, a comparative study of UK cancer genetic centres found no significant differences in counselees' cancer worry between centres pre-counselling (Hopwood et al 2004).…”

Section: Discussionmentioning

confidence: 94%

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

et al. 2011

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Counselees from different countries may differ in demographic and medical characteristics and this could affect their pre-counselling cognitions and psychosocial variables. Research outcomes may therefore not be easily transferable between countries. To examine this, a crossnational comparison of UK (West Midlands: WM) and Dutch (Middle Netherlands: MN) counselees in breast cancer genetic counselling was conducted. Two hundred thirty-eight WM and 156 MN proband counselees were compared on demographics, breast cancer history and referral pathways. Multivariate logistic regression analyses were performed to check whether national differences in knowledge of breast cancer and heredity, risk perception, worry and information needs persisted when corrected for the background characteristics. About half of the Dutch compared to 8% of UK counselees were affected by breast cancer. More UK than Dutch counselees were at high risk from hereditary breast cancer. UK counselees had higher risk perceptions and more knowledge about breast cancer prevalence, but these differences lost significance when corrected for counselees' risk levels and other background characteristics. Counselees from the UK might report higher levels of worry than Dutch counselees and this could not be explained by their background characteristics. Comparisons of findings between the UK and the Netherlands show that the UK seems to have a higher percentage of highrisk referrals and these counselees seem to have higher risk perceptions. Irrespective of their actual risk level, UK counselees might be more worried. Comparing findings between the different countries raises questions about how transferable research findings are from one culture to another.

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Clinical Characteristics Affect the Impact of an Uninformative DNA Test Result: The Course of Worry and Distress Experienced by Women Who Apply for Genetic Testing for Breast Cancer

Abstract: Women with an uninformative result form a heterogeneous group of test applicants. The subpopulation of those with both a personal history of cancer and a relatively high pedigree-based risk expressed the highest levels of worry 7 months after DNA testing.

Cited by 86 publications

References 18 publications

Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study

Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study

The counsellees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

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