Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study

Hallowell, Nina; Murton, F; Statham, Helen; Green, J M; Richards, Martin

doi:10.1136/bmj.314.7076.281

Cited by 94 publications

(68 citation statements)

References 7 publications

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“…The finding that the vast majority of women come to genetic counselling to obtain information about prevention, surveillance and risk information for themselves and for their children is similar to that reported by other studies (Julian-Reynier et al, 1996Hallowell et al, 1997;). Four out of five women expected a genetic test, over a third expected a physical examination (33%) and just under half expected a referral for screening (43%).…”

Section: Were Women's Expectations Of Genetic Counselling Met?supporting

confidence: 85%

“…These categories were based on (i) the National Health and Medical Research Council's Guidelines on the Familial Aspects of Cancer: A Guide to Clinical Practice (NH and MRC, 1999), (ii) an Australian survey of clinical geneticists/ genetic counsellors describing their practice (Lobb et al, 2001) and (iii) studies that identified women's expectations of the genetic counselling session (Hopwood et al, 1993;Julian-Reynier et al, 1996Hallowell et al, 1997;Michie et al, 1997;Veach et al, 1999;Brain et al, 2000).…”

Section: Coding Of Transcripts Of Audio-tapesmentioning

confidence: 99%

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Tailoring communication in consultations with women from high risk breast cancer families

et al. 2002

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This multicentre study examined the influence of patient demographic, disease status and psychological variables on clinical geneticists/genetic counsellors (consultants) behaviours in initial consultations with women from high-risk breast cancer families. One hundred and fifty-eight women completed a pre-clinic self-report questionnaire. The consultations were audiotaped, transcribed verbatim and coded. Consultants did not vary their behaviour according to women's expectations. However, significantly more aspects of genetic testing were discussed with women who were affected with breast cancer (P50.001), screening and management with unaffected women (P=0.01) and breast cancer prevention with younger women (P=0.01). Prophylactic mastectomy was discussed more frequently with women with medical and allied health training (P=0.02), and prophylactic oophorectomy with women affected with breast cancer (P=0.03), those in non-professional occupations (P=0.04) and with a family history of breast and ovarian cancer (P50.001). Consultants used significantly more behaviours to facilitate understanding with women who were in non-professional occupations (P=0.04); facilitated active patient involvement more with women affected with breast cancer (P50.001) and used more supportive and counselling behaviours with affected women (P=0.02). This study showed that patient demographics were more likely to predict consultants' communication behaviours than the woman's psychological status. Methods to facilitate assessment of psychological morbidity are needed to allow more tailored communication. Previous research has documented consultants' reports of the cancer genetic services typically provided to women from high-risk breast cancer families. These include cancer risk assessment and education, facilitation of genetic testing, pre-and post-test counselling, provision of personally tailored cancer risk management recommendations, and psychosocial counselling and support services (NH and MRC, 1999).A recent survey of Australian clinical geneticists and genetic counsellors identified the provision of individualised care as the single most important goal of genetic counselling (Lobb et al, 2001). These consultants emphasised the variability in women's current levels of expectations and needs when they attend genetic counselling and the importance of tailoring communication accordingly.Studies that have examined levels of breast cancer genetics knowledge among women with a family history of breast cancer (Lerman et al, 1996Hughes et al, 1997;Wonderlick and Fine, 1997;Cull et al, 1998;Bluman et al, 1999;Donovan and Tucker, 2000) have found wide variation in knowledge about many facets of genetic testing, including the cancer risks associated with different genes and different mutations and the effectiveness of interventions, for example screening, chemoprevention, or surgery for reducing risk (Geller et al, 1997;Audrain et al, 1998;Bluman et al, 1999).Similarly, there is wide variation in the accuracy of women's perceptions of their li...

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Section: Were Women's Expectations Of Genetic Counselling Met?supporting

confidence: 85%

Section: Coding Of Transcripts Of Audio-tapesmentioning

confidence: 99%

Tailoring communication in consultations with women from high risk breast cancer families

et al. 2002

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“…Unlike population-based studies (see above), studies investigating genetic knowledge and attitudes in patients usually concentrate on specific disease-related issues [e.g., [15][16][17][18]. The present study aimed to investigate knowledge and attitudes related to genetics and genetic testing in general, among patients with chronic illnesses (e.g., diabetes, heart disease, musculoskeletal disease).…”

Section: Introductionmentioning

confidence: 99%

Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

Morren

Rijken

Baanders

et al. 2007

Patient Education and Counseling

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Objective: Genetics increasingly permeate everyday medicine. When patients want to make informed decisions about genetic testing, they require genetic knowledge. This study examined the genetic knowledge and attitudes of patients with chronic diseases, and the relationship between both. In addition, patients were asked about their preferred source of genetic information. Methods: Questionnaires were mailed to participants of a nationwide representative sample of patients with chronic diseases in the Netherlands (n = 1916). Results: The response rate was 82% (n = 1496). Perceived genetic knowledge was low, particularly among older and lower educated patients. Attitudes towards genetics were rather positive, especially among younger and higher educated patients. Some concerns were also documented, mainly about the consequences of genetic testing for employment and taking insurance. Patients who perceived to have little knowledge found it difficult to formulate an opinion about genetic testing. Higher levels of genetic knowledge were associated with a more favourable attitude towards genetics. Chronic patients prefer to receive genetic information from their GP. Conclusion: Chronic patients are ill prepared when they require genetic knowledge to make decisions regarding the treatment of their disease. This seems to result from a knowledge deficiency rather than from disagreement with the genetic developments. Practice implications: When chronic patients are in need of information about genetics or genetic testing, their general practitioner should provide this. #

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“…Both UK and Dutch counselees who are the first in their family to request cancer genetic counselling (probands) have unrealistic expectations or do not know what to expect (Metcalfe et al 2007;Bernhardt et al 2000;Hallowell et al 1997;Pieterse et al 2005b). Many expect to be offered a DNA-test independent of their disease status and risk profile (Metcalfe et al 2007;Hallowell et al 1997;Pieterse et al 2005c). Also, many people in the UK and the NL lack basic genetic knowledge (Henneman et al 2004;Calsbeek et al 2007;Morren et al 2007;Mesters et al 2005;Walter et al 2004).…”

Section: Introductionmentioning

confidence: 99%

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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Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study

Cited by 94 publications

References 7 publications

Tailoring communication in consultations with women from high risk breast cancer families

Tailoring communication in consultations with women from high risk breast cancer families

Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

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

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