Psychosocial Issues in Cancer Genetics

Bleiker, Eveline M. A.; Hahn, Daniela; Aaronson, Neil K.

doi:10.1080/02841860310004391

Cited by 55 publications

(31 citation statements)

References 74 publications

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“…Contrary to our expectations, there was no difference between decliners and participants in level of hereditary breast cancer knowledge 16 or reported optimism, 8 and level of distress was not associated with participation in genetic testing 2,10,14 or timing of withdrawal from the counseling protocol.…”

Section: Discussioncontrasting

confidence: 56%

“…Contrary to our expectations, these patients did not withdraw from the protocol because of experienced psychological distress; however, an important reason for late decliners to withdraw was the anticipation of the impact of being identified as a mutation carrier. These late decliners may include possible vulnerable first messengers 8 in need of support in contacting their family if they choose to pursue genetic testing in the future. This groups' identified barriers are comparable to those found in other studies, e.g., expected emotional impact on one's self and family 12 and apprehension about the test result.…”

Section: Mean (Sd)mentioning

confidence: 99%

“…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.…”

mentioning

confidence: 99%

mentioning

confidence: 99%

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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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Section: Discussioncontrasting

confidence: 56%

Section: Mean (Sd)mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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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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“…Alguns estudos demonstram que, de forma geral, as mulheres que já tinham algum tipo de desordem emocional antes da descoberta da doença estão mais propensas a desenvolvê-las depois do diagnóstico do que aquelas que nunca tiveram nenhuma ocorrência (15) .…”

Section: Sentimentos Mais Freqüentesunclassified

Sentimentos e experiências na vida das mulheres com câncer de mama

Vieira

Lopes

Shimo

2007

Rev. esc. enferm. USP

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Identificar os sentimentos e as experiências relacionados ao câncer de mama torna-se importante para que as pessoas de seu convívio social compreendam essa etapa da vida da mulher. Uma revisão da literatura foi realizada buscando identificar quais são os pensamentos e os sentimentos mais comuns experimentados pelas mulheres depois do diagnóstico de câncer de mama. Foi realizada por meio de busca bibliográfica no LILACS e MEDLINE, e as palavras-chave utilizadas foram: breast, câncer, feeling, female, representações, sentimentos. Conteúdos do câncer foram abordados, como o significado da doença e suas implicações para a vida emocional e social da mulher. Concluiu-se que as experiências relacionadas ao câncer de mama têm um âmbito muito individual, tendo representações diferenciadas para cada mulher.

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Effect of a Computer-Based Decision Aid on Knowledge, Perceptions, and Intentions About Genetic Testing for Breast Cancer Susceptibility

Green¹,

Peterson²,

Baker³

et al. 2004

JAMA

269

249

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N RECENT YEARS, GENETIC TESTING for inherited cancer predisposition has become widely available. [1][2][3] Initially, the use of such testing was limited to those enrolled in research studies at specialized medical centers. However, developments in testing technology and widespread publicity in the news media have led to increased testing for conditions such as breast cancer susceptibility 4,5 in primary care [6][7][8] and other settings, raising questions about how to adequately inform patients about their personal breast cancer risk and the pros and cons of genetic testing. 9-11 Professional organizations advise that people who want to learn about their options and alternatives regarding genetic testing should be referred to specialists such as genetic counselors. 12-14 However, there are only about 400 genetic counselors in the United States who identify themselves as specializing in cancer genetics, 15 and cancer genetic counselors are not available in some regions of the Author Affiliations and Financial Disclosures are listed at the end of this article.

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Psychosocial Issues in Cancer Genetics

Cited by 55 publications

References 74 publications

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

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

Sentimentos e experiências na vida das mulheres com câncer de mama

Effect of a Computer-Based Decision Aid on Knowledge, Perceptions, and Intentions About Genetic Testing for Breast Cancer Susceptibility

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