Informational needs of individuals and families with hereditary cancers

Kelly, Patricia T.

doi:10.1016/0749-2081(92)90042-2

Cited by 23 publications

(5 citation statements)

References 22 publications

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“…The experiences of patients undergoing genetic testing for breast and ovarian cancer have been examined (Kelly 1992;Bleiker et al 1997;Audrain et al 1998;Stadler and Mulvihill 1998;Lynch et al 1999). Most studies are based on hypothetical scenarios about anticipated feelings and behaviors among clients prior to genetic testing.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of the Needs of Male Carriers of Mutations in BRCA1 or BRCA2 Who Have Undergone Genetic Counseling

Liede

Metcalfe

Hanna

et al. 2000

The American Journal of Human Genetics

114

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To date, the concerns of men at risk of inheriting a BRCA1 mutation or a BRCA2 mutation have received little attention. It had been anticipated that few men would be interested in predictive testing when a BRCA mutation was identified in their family. However, these men are often affected emotionally by diagnoses of breast cancer in their relatives and may themselves harbor fears that cancer will develop. Male carriers of BRCA1/2 mutations are at increased risk of development of cancers of several types, including those of the breast and prostate. We conducted an evaluation of the needs and experiences of 59 male carriers of BRCA1/2 mutations followed at either the University of Toronto or Creighton University. We assessed their motivations for seeking genetic counseling and testing, involvement in family discussions of breast and ovarian cancer, risk perception, changes in cancer-screening practices, and overall satisfaction with the genetic-counseling process. The principal motivation for seeking genetic counseling was concern for their daughters. The majority (88%) of men participated in family conversations about breast and ovarian cancer, and 47% participated in conversations about prophylactic surgery. Most men believed that they were at increased risk of development of cancer (prostate, breast, colorectal, and skin cancers). However, fewer than one-half (43%) of the men with no previous diagnosis of cancer stated that their prostate cancer-surveillance practices had changed after they had received genetic test results. More than one-half (55%) had intrusive thoughts about their cancer risk. Although levels of satisfaction were high, practitioners should be aware of (a) potential pressures influencing men to request predictive testing, (b) the difficulties that men encounter in establishing surveillance regimens for breast and prostate cancer, and (c) the general lack of information about men's particular experiences in the medical community.

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Section: Introductionmentioning

confidence: 99%

Evaluation of the Needs of Male Carriers of Mutations in BRCA1 or BRCA2 Who Have Undergone Genetic Counseling

Liede

Metcalfe

Hanna

et al. 2000

The American Journal of Human Genetics

114

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show abstract

“…Recall that, although risk is typically defi ned as the numerical probability of a given event occurring, lay conceptions of risk are based on a much richer set of cognitive and aff ective beliefs. When a health problem is being considered, information about the numerical probability of a risk is viewed as insuffi cient; people are interested in information about what causes a health problem, about the severity of its consequences, and about what can be done to either prevent or treat the problem (51,52). Th is information is considered valuable because it enables people to develop a mental model that delineates the personal relevance of a given risk-what might cause one to develop a health problem and the potential costs of developing that problem.…”

Section: Impact Of Contextualized Approachesmentioning

confidence: 99%

Treating People With Information: an Analysis and Review of Approaches to Communicating Health Risk Information

1999

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“…Without empirical verification that CSA does in fact cause individuals to be incapable of attending college, Spiegel's claim should be seen for what it is--unsubstantiated opinion rather than scientific fact." There is ample evidence of a relationship between childhood sexual abuse (CSA) and academic difficulties (e.g., Kelly, 1992;Kendall-Tackett et al, 1993;Lisak & Luster, 1994) as well as failing to finish high school (Edgardh & Ormstad, 2000) or college (Duncan, 2000). Rind et al are contemptuous of case reports, but they rely upon a single case of what they mistakenly call "multiple personality disorder" to buttress their point of view.…”

Section: Sample Biasmentioning

confidence: 96%

Who is in Procrustes’ bed?

Spiegel

2001

Sex Cult

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Informational needs of individuals and families with hereditary cancers

Cited by 23 publications

References 22 publications

Evaluation of the Needs of Male Carriers of Mutations in BRCA1 or BRCA2 Who Have Undergone Genetic Counseling

Evaluation of the Needs of Male Carriers of Mutations in BRCA1 or BRCA2 Who Have Undergone Genetic Counseling

Treating People With Information: an Analysis and Review of Approaches to Communicating Health Risk Information

Who is in Procrustes’ bed?

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