A randomized trial of specialist genetic assessment: psychological impact on women at different levels of familial breast cancer risk

Brain, Katherine Emma; Norman, Paul; Gray, Jonathon; Rogers, Cerilan; Mansel, Robert Edward; Harper, Peter S.

doi:10.1038/sj.bjc.6600051

Cited by 70 publications

(98 citation statements)

References 35 publications

(33 reference statements)

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“…Unlike previous research that found significant reductions in cancer worry only for those women at low or moderate risk of breast cancer (i.e. Brain et al, 2002), reductions in cancer worry in the present study were not dependent on objective risk.…”

Section: Discussioncontrasting

confidence: 55%

“…Secondary analysis of the data (Brain et al, 2002) showed some significant differences in psychological outcomes between groups of women at different levels of breast cancer risk. Only those women at low or moderate risk showed significant reductions in cancer worry and perceived risk of breast cancer.…”

mentioning

confidence: 99%

“…Brain et al (2000) showed that there was no difference in the effectiveness of multidisciplinary cancer genetics teams and breast surgeons in terms of psychological outcomes in the management of familial breast cancer in Wales. Secondary analysis of the data (Brain et al, 2002) showed some significant differences in psychological outcomes between groups of women at different levels of breast cancer risk. Only those women at low or moderate risk showed significant reductions in cancer worry and perceived risk of breast cancer.…”

mentioning

confidence: 99%

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A randomised controlled trial of breast cancer genetics services in South East Scotland: psychological impact

et al. 2003

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This study compared the psychological impact of two models of breast cancer genetics services in South East Scotland. One hundred and seventy general practices were randomised to refer patients to the existing standard regional service or the novel communitybased service. Participants completed postal questionnaires at baseline (n ¼ 373), 4 weeks (n ¼ 276) and 6 months (n ¼ 263) to assess perceived risk of breast cancer, subjective and objective understanding of genetics and screening issues, general psychological distress, cancer worry and health behaviours. For participants in both arms of the trial, there were improvements in subjective and objective understanding up to 4 weeks which were generally sustained up to 6 months. However, improvements in subjective understanding for the women at low risk of breast cancer (i.e. not at significantly increased risk) in the standard service arm did not reach statistical significance. Cancer worry was significantly reduced at 6 months for participants in both arms of the trial. The two models of cancer genetics services tested were generally comparable in terms of the participants' psychological outcomes. Therefore, decisions regarding the implementation of the novel community-based service should be based on the resources required and client satisfaction with the service. Media attention to scientific developments in cancer genetics has resulted in a greatly increased demand for cancer genetics services. These services aim to identify individuals who have inherited a significantly increased risk of cancer in order to counsel them about their risks and to offer appropriate risk management to reduce morbidity and mortality. There is a challenge to provide this information in ways that the lay public can utilise to inform their health-care choices without causing undue psychological distress. Individuals who are not at significantly increased risk also need appropriate reassurance without precluding an appropriate vigilance to symptoms of sporadic cancer. There is also a challenge to respond to these new developments within existing health-care budgets. Internationally, there is a lack of consensus about how best to deliver cancer genetic services (Steel et al, 1999) and an urgent need for empirical evidence to inform service development.A survey of 22 regional cancer genetics services in the UK in 1998 reported that the predominant users of these services were women with a family history of breast cancer (Wonderling et al, 2001). Of the women who are diagnosed with breast cancer, about 10% report having a family history of the disease (Narod, 2002). Of these cases, only a small proportion will be due to inherited genetic mutations in one of the known susceptibility genes, BRCA1 and BRCA2. These genetic mutations give rise to increased lifetime risks of developing the disease, often at an earlier age than is the norm for sporadically occurring cases.Brain et al (2000) showed that there was no difference in the effectiveness of multidisciplinary cancer genetics teams and b...

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Section: Discussioncontrasting

confidence: 55%

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confidence: 99%

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confidence: 99%

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A randomised controlled trial of breast cancer genetics services in South East Scotland: psychological impact

et al. 2003

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“…6,7 There are few data on models of service delivery 8 and, until recently, there have been few randomised controlled trials (RCTs) in the clinical genetics arena. One UK randomised trial 9 found no differences in psychological outcomes (anxiety, cancer worry, perceived risk, interest in genetic testing and satisfaction) when comparing a multidisciplinary specialist genetics service with surgical provision for women at familial risk for breast cancer. Although this study described the health professionals involved in providing the two services, and some details about the interventions offered, the process attributes of the services compared, such as waiting times, proximity, length of consultation and so on were not clear.…”

Section: Introductionmentioning

confidence: 99%

What process attributes of clinical genetics services could maximise patient benefits?

et al. 2008

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There is limited evidence about what process attributes of clinical genetics services may be highly valued by patients and service providers. The aim in this qualitative grounded theory study was to explore what process attributes may be highly valued by those stakeholders. Seven focus groups (n ¼ 33) and nineteen one-to-one interviews were conducted (total sample size ¼ 52). Five process attributes were identified as highly valued by patients and health professionals: (1) local and accessible services (2) open access and follow-up, (3) coordinated, tailored family care, (4) quality of the patient -clinician relationship and (5) time to talk. These findings will be useful in designing models of service delivery that could be tested in intervention studies.

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“…6,7 Information is required about cancers in maternal and paternal relations, as well as details of unaffected relatives. Upon this data, risk estimates are calculated -average (ie population), moderate or high risk -and decisions taken, such as reassurance, surveillance, genetic testing or prophylactic surgery.…”

Section: Introductionmentioning

confidence: 99%

Pedigree construction and disease confirmation: a pilot study in Wales exploring the role of nonclinical personnel

Tempest

Iredale

Gray³

et al. 2005

Eur J Hum Genet

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Pedigree construction and disease confirmation are the means by which reported family histories are translated into a verified clinical tool informing risk assessment and management decisions by clinical genetics staff. In this study, we hypothesised that pedigree generation data processes do not generally require the clinical expertise of genetic counsellors and that they could be successfully transferred to nonclinical data administrators. We made a pragmatic comparison of two processes of pedigree generation by different personnel from 14 consecutive family history questionnaires containing 88 living and decease affected individuals. The pedigrees generated by the genetic counsellor and the data administrator were compared; discrepancies were quantified and their source determined. The information gathered by the data administrator mirrored that of the genetic counsellors in 89% of cases. Time was saved by permitting direct access to cancer registry and local oncology centre databases. Constructing a pedigree is not always a case of transferring clear-cut data. Decisions need to be made about which cancers to confirm. Notable differences emerged in the number of pieces of information not transferred. Ambiguous information was often interpreted differently, suggesting the need for clinical staff to review pedigrees after their initial plotting by the data administrator. This study demonstrates a good degree of concordance between pedigrees constructed by a nonclinical data administrator and those of experienced genetic counsellors. However, the redirection of all pedigree activity to nonclinical personnel up to the point of risk review is not possible at present.

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A randomized trial of specialist genetic assessment: psychological impact on women at different levels of familial breast cancer risk

Cited by 70 publications

References 35 publications

A randomised controlled trial of breast cancer genetics services in South East Scotland: psychological impact

A randomised controlled trial of breast cancer genetics services in South East Scotland: psychological impact

What process attributes of clinical genetics services could maximise patient benefits?

Pedigree construction and disease confirmation: a pilot study in Wales exploring the role of nonclinical personnel

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