A literature review of the psychological impact of genetic testing on breast cancer patients

Schlich-Bakker, Kathryn J.; Kroode, H.F.J. ten; Ausems, Margreet G. E. M.

doi:10.1016/j.pec.2005.08.012

Cited by 90 publications

(53 citation statements)

References 42 publications

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“…Research has only recently begun to examine the effects of predictive and predispositional genetic testing on individuals and their families. Many reviews have focused patients after detection of a single mutation (e.g., BRCA1/2), whereas others have focused only on psychological [45][46][47] or behavioral outcomes. 48 This review is the first, to our knowledge, to summarize the collective perceived risk, affective and behavioral impacts before and after predispositional genetic testing among unaffected individuals.…”

Section: Discussionmentioning

confidence: 99%

“…Reviews on the psychological impact of genetic testing have reported either no change in psychological outcomes among unaffected mutation carriers relative to baseline 45,46 or decreased anxiety and worry after genetic testing. 47 Meiser 45 noted that some studies have consistently shown short-term increases in anxiety among unaffected carriers.…”

Section: Discussionmentioning

confidence: 99%

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A systematic review of perceived risks, psychological and behavioral impacts of genetic testing

Heshka

Palleschi

Howley

et al. 2008

Genetics in Medicine

289

255

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Genetic testing may enable early disease detection, targeted surveillance, and result in effective prevention strategies. Knowledge of genetic risk may also enable behavioral change. However, the impact of carrier status from the psychological, behavior, and perceived risk perspectives is not well understood. We conducted a systematic review to summarize the available literature on these elements. An extensive literature review was performed to identify studies that measured the perceived risk, psychological, and/or behavioral impacts of genetic testing on individuals. The search was not limited to specific diseases but excluded the impacts of testing for single gene disorders. A total of 35 articles and 30 studies were included. The studies evaluated hereditary nonpolyposis colorectal carcinoma, hereditary breast and ovarian cancer, and Alzheimer disease. For affective outcomes, the majority of the studies reported negative effects on carriers but these were short-lived. For behavioral outcomes, an increase in screening behavior of varying rates was demonstrated in carriers but the change in behaviors was less than expected. With respect to perceived risk, there were generally no differences between carriers and noncarriers by 12 months after genetic testing and over time risk perception decreased. Overall, predispositional genetic testing has no significant impact on psychological outcomes, little effect on behavior, and did not change perceived risk. It seems as though better patient education strategies are required. Our data would suggest better knowledge among carriers would not have significant psychological impacts and therefore, it is worth pursuing improved educational strategies. Genet Med 2008:10(1):19 -32.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

A systematic review of perceived risks, psychological and behavioral impacts of genetic testing

Heshka

Palleschi

Howley

et al. 2008

Genetics in Medicine

289

255

View full text Add to dashboard Cite

show abstract

“…As a result of these QPS questions, these topics were significantly more discussed. Because counselees' risk perception accuracy has been found to be only scarcely improved by genetic counseling, 36 more questions and information about the risks for the counselee and relatives seem to be a turn in the right direction, even more so because the topic of risk for relatives mostly remained untouched in the UC-group consultations. This is consistent with the results of QPS use for oncology visits, in which a QPS also shifted the focus of the consultation.…”

Section: Discussionmentioning

confidence: 99%

A pre-visit website with question prompt sheet for counselees facilitates communication in the first consultation for breast cancer genetic counseling: findings from a randomized controlled trial

Albada

Dulmen

Ausems

et al. 2012

Genetics in Medicine

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original research article 535 Purpose: The initial breast cancer genetic counseling visit is mainly educational, with large amounts of relatively standard information and little counselee participation. Counselors might provide more counselee-specific information if counselees would participate more. A pre-visit website providing computer-tailored information and a question prompt sheet (QPS) might help counselees to pursue a more active role. methods:Counselees were randomized to receive usual care (UC) or UC plus the pre-visit website. The QPS questions were sent to the counselor before the visit. All counselees completed a baseline questionnaire, and visits were videotaped.Results: Intervention-group counselees (n = 102) did not ask more questions than UC-group counselees (n = 90). However, counselees in the intervention group more often shared their agenda (B = 10.37; confidence interval (CI) 2.68-18.06; P = 0.01), directed the communication (B = 0.41; CI 0.28-0.53; P = 0.01), and paraphrased the counselors' words (B = 5.18; CI 0.43-9.92; P = 0.03). Counselors introduced and answered the QPS questions. As a result, they provided more information about the topics of these questions, and the information provided was more specific to whether there was an indication for DNA testing.conclusion: A pre-visit website with QPS helped counselees to communicate more assertively. As a result, the information provided was more counselee specific, without affecting the visit duration.Genet Med 2012:14(5):535-542

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“…7,8 However, most studies of genetic testing have been in healthy individuals, and its effect may be different after experiencing cancer. 9,10 Several questions arise from finding that cytogenetic testing created false expectations about improving survival. How did this misconception arise, when patients were told explicitly that prognostication, screening, and treatment of metastatic disease rarely prolonged life?…”

Section: Discussionmentioning

confidence: 99%

Psychological aspects of cytogenetic testing of uveal melanoma: preliminary findings and directions for future research

Cook

Damato

Marshall

et al. 2008

Eye

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Purpose To determine the proportion of uveal melanoma patients who accept cytogenetic prognostication and to understand the reasons for their decision and the psychological impact of an adverse prognosis. Methods Patients treated by enucleation or local resection for uveal melanoma between 01 January 2003 and 31 December 2006 were identified and the proportion undergoing cytogenetic studies was determined. In-depth interviews of fourteen patients living near our centre were conducted to determine their reasons for accepting cytogenetic testing and their reactions to any results received. Results In total 97% of 298 eligible patients with uveal melanoma treated by enucleation or local resection accepted an offer of cytogenetic prognostication. None of the patients interviewed in detail expressed any regret about having this test and there was no evidence of any harm. The main benefit perceived by patients was that they would have greater control and that screening for metastatic disease and early treatment might enhance chances of survival. This was despite counselling that prognostication, screening, and treatment are unlikely to prolong life and that the main purpose of cytogenetic studies is to allow for life-planning. Conclusions Almost all patients with uveal melanoma desire cytogenetic prognostication, although not for the reasons intended by their medical practitioners. Further studies are needed to understand patients' reactions to cytogenetic testing, so that care can be optimised.

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A literature review of the psychological impact of genetic testing on breast cancer patients

Cited by 90 publications

References 42 publications

A systematic review of perceived risks, psychological and behavioral impacts of genetic testing

A systematic review of perceived risks, psychological and behavioral impacts of genetic testing

A pre-visit website with question prompt sheet for counselees facilitates communication in the first consultation for breast cancer genetic counseling: findings from a randomized controlled trial

Psychological aspects of cytogenetic testing of uveal melanoma: preliminary findings and directions for future research

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