What do women really want to know? Motives for attending familial breast cancer clinics

Asperen, Christi J. van; Dijk, S. van; Zoeteweij, Moniek; Timmermans, Daniëlle R.M.; Bock, Geertruida H. de; Meijers-Heijboer, E.J.; Niermeijer, M. F.; Breuning, Martijn H.; Kievit, J.; Otten, W.

doi:10.1136/jmg.39.6.410

Cited by 60 publications

(60 citation statements)

References 14 publications

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“…Consistent with earlier findings of the UMCU (Pieterse et al 2005c) and with studies of other Dutch genetics centres (Van Asperen et al 2002;Van Dijk et al 2004), almost half of the counselees in Utrecht was higher educated (MSc/BSc). Thirty-eight percent of the population in the province of Utrecht is higher educated (Statistics 2003) and 28% of the Dutch population (Statistics 2009a).…”

Section: Discussionsupporting

confidence: 89%

“…Similar percentages of breast cancer-affected probands were reported in other Dutch studies (Van Asperen et al 2002;Van Dijk et al 2004) and a European comparative study of cancer genetic counselling also found that UK (cancer genetics centre Manchester) had few (10%) affected counselees, compared to 33% in the NL (genetics centre Leiden) (Hopwood et al 2003). Most Dutch affected counselees were referred by their consultant; most unaffected counselees were referred by their GP.…”

Section: Discussionsupporting

confidence: 82%

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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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Section: Discussionsupporting

confidence: 89%

Section: Discussionsupporting

confidence: 82%

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

et al. 2011

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“…A recent review (Bleiker et al, 2003) showed that these were also main motives for requesting genetic testing for hereditary cancer. Another important motive for seeking counseling was to receive emotional support or reduce worries (Brain et al, 2000;Collins et al, 2000b;van Asperen et al, 2002). This is in accordance with heightened levels of cancerrelated anxiety that have been documented in women with family histories of cancer (Valdimarsdottir et al, 1995), and in women seeking genetic counseling for cancer specifically (Audrain et al, 1997;Lloyd et al, 1996).…”

Section: Presumed Type Of Needs and Preferences Prior To Counselingmentioning

confidence: 54%

“…Important informational motives were to discuss own and/or family members' risk of cancer and to receive information on early detection of cancer and preventive actions (Bleiker et al, 1997;Brain et al, 2000;Collins et al, 2000a;Hallowell et al, 1997;Julian-Reynier et al, 1996;van Asperen et al, 2002), know the risk for one's children, or of passing on increased susceptibility to them (Bleiker et al, 1997;Collins et al, 2000a;Julian-Reynier et al, 1996;van Asperen et al, 2002), and to discuss one's family history and/or find out about genetic testing (Brain et al, 2000;van Asperen et al, 2002). A recent review (Bleiker et al, 2003) showed that these were also main motives for requesting genetic testing for hereditary cancer.…”

Section: Presumed Type Of Needs and Preferences Prior To Counselingmentioning

confidence: 99%

QUOTE-geneca: development of a counselee-centered instrument to measure needs and preferences in genetic counseling for hereditary cancer

et al. 2005

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SUMMARYCounselees' motives for seeking genetic counseling for hereditary cancer have already been investigated, however not using instruments based on counselees' perspective. In addition, expectations regarding the process of counseling have scarcely been assessed. This article describes the construction and psychometric properties of the QUOTEgene ca , a counselee-centered instrument intended to measure needs and preferences in genetic counseling for hereditary cancer. Formulation of the items involved input from counselees and the instrument was derived from a conceptual framework for measuring patient satisfaction. Two-hundred new counselees completed a questionnaire containing the instrument and measures of coping style (TMSI), generalized anxiety (STAI) and cancer-related stress reactions (IES), prior to their first consultation. Results showed that the instrument captures relevant issues of concern with high internal consistency, and was associated, as expected, with validated measures of coping style and distress. Responses showed that major concerns prior to counseling relate to: receiving information about risk and preventive strategies; the procedure of counseling; and preferences on how the interaction with the counselor proceeds. Receiving emotional support and discussing emotional aspects were considered relatively less important. Increasing insight into individual needs may help counselors in better addressing these concerns, potentially increasing the likelihood of successful counseling.

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“…In the precounseling period, counselees from families with no known mutation often value and expect to learn whether breast cancer in their family is hereditary or not. 22,29 Counselors need to explain the limitations of DNA technology in demonstrating heredity. In our sample, only seven women had DNA testing that showed the definite presence (5/7) or absence (2/7) of a mutation.…”

Section: Discussionmentioning

confidence: 99%

Risk communication in completed series of breast cancer genetic counseling visits

Pieterse

Dulmen

Dijk

et al. 2006

Genetics in Medicine

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Purpose: There is no consensus on how best to communicate risk in breast cancer genetic counseling. We studied risk communication in completed series of counseling visits and assessed associations with counselees' postcounseling risk perception and satisfaction. Methods: Pre-and postcounseling questionnaires and videorecordings of all visits were available for 51 affected and unaffected women from families with no known BRCA1/2 mutation, who fulfilled criteria for DNA testing. We developed a checklist for assessing risk communication and counselors' behaviors. Results: General risks were mainly communicated in initial visits, while counselee-specific risks were discussed mainly in concluding visits. The risks discussed most often were conveyed only numerically or qualitatively, and most were only stated positively or negatively. Counselors regularly helped counselees to understand the information, but seldom built on counselees' pre-existing perspective. Counselees' breast cancer risk perception after counseling was unrelated to whether this risk had been explicitly stated. The number of general risks discussed was negatively associated with counselees' satisfaction about counseling. Key Words: risk, counseling, breast cancer, communicationThe emphasis in cancer genetic counseling is on enhancing accurate and useful risk perceptions 1 as a means to promoting appropriate risk management. 2 In the case of breast cancer genetic counseling, various probability estimations are implicated, including breast cancer risk in the general population, estimation of whether the breast cancer is hereditary, breast cancer risk for mutation carriers, and the risk for counselee or relatives to develop or redevelop breast or ovarian cancer. Counselors may communicate more or less of these risks to counselees. One of the few studies on actual risk communication in breast cancer genetic counseling suggests that in individual initial visits, counselors provide only a few facts about risk. 3 Counselees' persisting inaccurate risk perceptions after counseling 4 -8 underlines the need for more insight into actual risk communication, and what is conveyed during the total counseling process rather than during initial visits only.There is no consensus about 'best practices' for how health care providers should present health-related risks 9,10 and there is still debate about what form of presentation counselees can most easily understand. 2,9,11 Studies assessing the preferred form of risk presentation among women counseled for suspected hereditary breast cancer found a majority having a preference for a specific format. 7,12 No clear preference was agreed upon though, 7 suggesting that counselors should convey risks in various formats. Moreover, clinical risk communication can be viewed as a two-way process. 13 To be able to inform counselees in a personally meaningful way means that their preexisting risk perceptions, 14,15 risk beliefs, 16 and preferred risk format have to be identified first.The aim of this study is to characterize ac...

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What do women really want to know? Motives for attending familial breast cancer clinics

Cited by 60 publications

References 14 publications

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

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

QUOTE-geneca: development of a counselee-centered instrument to measure needs and preferences in genetic counseling for hereditary cancer

Risk communication in completed series of breast cancer genetic counseling visits

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