Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer

Schlich-Bakker, Kathryn J.; Wárlám-Rodenhuis, Carla C.; Echtelt, J. van; Bout, Jan van den; Ausems, Margreet G. E. M.; Kroode, H.F.J. ten

doi:10.1016/j.ejca.2006.05.032

Cited by 39 publications

(49 citation statements)

References 28 publications

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“…As our understanding of molecular genetics continues to accelerate and includes polygenetic and multi-factorial influences on cancer, interpreting the results of genetic testing, and providing GC offers new and increasingly complex challenges [33,40]. Thus, it is important to monitor changes in subjects undergoing GC to understand the process and to be prepared to offer the needed support.…”

Section: Resultsmentioning

confidence: 99%

Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer

Bjorvatn

Eide

Hanestad

et al. 2009

Support Care Cancer

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Section: Resultsmentioning

confidence: 99%

Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer

Bjorvatn

Eide

Hanestad

et al. 2009

Support Care Cancer

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“…15,16 Generally these studies, conducted almost exclusively among women with a family history, found that while distress among carriers increased shortly after receiving results it returned to pretesting levels over time. [13][14][15][16] In women with no, or minimal, knowledge of a family history, a mutation-positive TFGT result is likely to be unexpected. These women may be particularly vulnerable to psychological distress following TFGT.…”

Section: Introductionmentioning

confidence: 99%

When knowledge of a heritable gene mutation comes out of the blue: treatment-focused genetic testing in women newly diagnosed with breast cancer

et al. 2016

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for the TFGT Collaborative Group 15Selection of women for treatment-focused genetic testing (TFGT) following a new diagnosis of breast cancer is changing. Increasingly a patient's age and tumour characteristics rather than only their family history are driving access to TFGT, but little is known about the impact of receiving carrier-positive results in individuals with no family history of cancer. This study assesses the role of knowledge of a family history of cancer on psychosocial adjustment to TFGT in both women with and without mutation carrier-positive results. In-depth semistructured interviews were conducted with 20 women who had undergone TFGT, and who had been purposively sampled to represent women both family history and carrier status, and subjected to a rigorous qualitative analysis. It was found that mutation carriers without a family history reported difficulties in making surgical decisions quickly, while in carriers with a family history, a decision regarding surgery, electing for bilateral mastectomy (BM), had often already been made before receipt of their result. Long-term adjustment to a mutation-positive result was hindered by a sense of isolation not only by those without a family history but also those with a family history who lacked an affected relative with whom they could identify. Women with a family history who had no mutation identified and who had not elected BM reported a lack of closure following TFGT. These findings indicate support deficits hindering adjustment to positive TFGT results for women with and without a family history, particularly in regard to immediate decision-making about risk-reducing surgery.

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“…25 During their first visit to the Department of Radiotherapy, patients were screened for eligibility for genetic counseling using factors presumed to be predictive for hereditary breast cancer. If they checked positive for at least one factor, patients were offered a family pedigree compila-…”

Section: Methodsmentioning

confidence: 99%

“…25 Only 19% of our total sample felt overwhelmed by their cancer diagnosis and treatment to the extent that they would have preferred to be approached for genetic counseling at a later point. The other 81% agreed with the timing of approach or would have liked to have been approached earlier during their primary treatment.…”

Section: Mean (Sd)mentioning

confidence: 99%

Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer

Schlich-Bakker

Kroode

Wárlám-Rodenhuis

et al. 2007

Genetics in Medicine

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Purpose: Little is known about reasons why eligible breast cancer patients decline BRCA mutation testing. They may withdraw at different stages during genetic counseling for different reasons. We prospectively studied perceived benefits and barriers to genetic counseling and BRCA testing in 102 newly diagnosed breast cancer patients approached for genetic counseling at the start of radiotherapy. Methods: Patients completed questionnaires and participated in interviews at different stages of the counseling protocol. Results: Participation was not influenced by distress, knowledge about hereditary breast cancer, previous genetic testing in relatives, or perceived risks and barriers. Immediate decliners (n ϭ 23) do not believe genetic testing is relevant for them.Patients who decline after pedigree compilation (n ϭ 14) are more hesitant and anxious about the influence of the test result on their future often wishing to postpone further testing. Late decliners (n ϭ 7) withdraw afraid of the test result and/or after a relative's objection. These decliners are not easily identified upon approach because they are similar to patients who receive a DNA test result (n ϭ 58). Notwithstanding their decline, 81% agreed to the timing or would have preferred an earlier approach for genetic counseling. Conclusion: Decliners may make more informed decisions after tailored health education, including adequate risk information. Genet Med 2007:9(11):766 -777. Key Words: genetic testing, participation, decline, barriers, breast cancer patientsWomen from high-risk families can obtain risk estimations for breast and ovarian cancer through BRCA1/2 mutation testing. Carrying a BRCA1/2 gene mutation increases one's lifetime risk of developing breast and/or ovarian cancer compared with the general population. 1 The most noted benefits of testing for mutations are: (1) to obtain breast cancer risk information for one's self and family members, particularly any children, (2) to learn about ovarian cancer risk, (3) to obtain certainty, and (4) to make more informed decisions about prophylactic mastectomy and prophylactic oophorectomy. [2][3][4][5][6][7][8] Despite these evident benefits, not all eligible individuals choose to participate in genetic counseling and BRCA1/2 testing.The uptake of presymptomatic testing is higher in persons of higher socioeconomic status, who have health insurance, who show a higher knowledge about DNA testing, who perceive the benefits as important, and who have more relatives affected by breast cancer. 3 In addition, Biesecker et al. 9 found that members of families with an identified BRCA mutation were more likely to have genetic testing when they become old (Ͼ40 years), married, and if there was a higher level of family cohesiveness. In these families, cancer-specific distress and worry play a significant role in the choice to test for BRCA1 mutations 2,10 as does a greater perceived risk of being a mutation carrier and of developing breast or ovarian cancer, and the perception that the advantages of BRCA tes...

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Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer

Cited by 39 publications

References 28 publications

Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer

Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer

When knowledge of a heritable gene mutation comes out of the blue: treatment-focused genetic testing in women newly diagnosed with breast cancer

Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer

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