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

Fry, Alison; Cull, Ann; Appleton, Sally; Rush, Robert; Holloway, Susan; Gorman, Dermot; Cetnarskyj, Roseanne; Thomas, R.J.; Campbell, Joyce; Anderson, Elaine; Steel, Michael; Porteous, Mary; Campbell, Harry

doi:10.1038/sj.bjc.6601170

Cited by 44 publications

(62 citation statements)

References 18 publications

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“…In the trial by Brain et al (2000), the addition of specialist genetic assessment to the standard surgical consultation had no effect on patients' psychological outcomes, risk perception or satisfaction, although knowledge of cancer genetics showed greater improvement. The other RCT found community-based genetic nurse specialists to be generally comparable to the standard service (consultant geneticist), in terms of psychosocial outcomes and patient satisfaction, with the additional benefit of lower staff and patient costs (Fry et al, 2003;Holloway et al, 2004).…”

Section: Discussionmentioning

confidence: 97%

“…Alternative models for how nurse counsellors might provide a risk assessment service include the concept of working in liaison or outreach settings (Emery et al, 1999;Fry et al, 1999). Two randomised controlled trials have reported on different models of service delivery for genetic counselling for risk of breast cancer (Brain et al, 2000;Fry et al, 2003). In the trial by Brain et al (2000), the addition of specialist genetic assessment to the standard surgical consultation had no effect on patients' psychological outcomes, risk perception or satisfaction, although knowledge of cancer genetics showed greater improvement.…”

Section: Discussionmentioning

confidence: 99%

“…However, these mutations are implicated in around only 5 -10% of breast cancer cases, with the result that genetic testing is not appropriate for the majority of women with a family history of breast cancer. Genetic counselling services aim to identify individuals who have a significantly increased genetic risk of cancer and counsel them about appropriate risk management to reduce morbidity and mortality (Fry et al, 2003). Access to surveillance, testing and other interventions is usually dependent on the outcome of the initial genetic counselling and risk assessment.…”

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confidence: 99%

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Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials

et al. 2006

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This study compared genetic nurse counsellors with standard services for breast cancer genetic risk counselling services in two regional genetics centres, in Grampian region, North East Scotland and in Cardiff, Wales. Women referred for genetic counselling were randomised to an initial genetic counselling appointment with either a genetic nurse counsellor (intervention) or a clinical geneticist (current service, control). Participants completed postal questionnaires before, immediately after the counselling episode and 6 months later to assess anxiety, general health status, perceived risk and satisfaction. A parallel economic evaluation explored factors influencing cost-effectiveness. The two concurrent randomised controlled equivalence trials were conducted and analysed separately. In the Grampian trial, 289 patients (193 intervention, 96 control) and in the Wales trial 297 patients (197 intervention and 100 control) returned a baseline questionnaire and attended their appointment. Analysis suggested at least likely equivalence in anxiety (the primary outcome) between the two arms of the trials. The cost per counselling episode was d11.54 less for nurse-based care in the Grampian trial and d12.50 more for nurse-based care in Cardiff. The costs were sensitive to the grade of doctor (notionally) replaced and the extent of consultant supervision required by the nurse. In conclusion, care based on genetic nurse counsellors was not significantly different from conventional cancer genetic services in both trial locations.

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Section: Discussionmentioning

confidence: 97%

Section: Discussionmentioning

confidence: 99%

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confidence: 99%

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Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials

et al. 2006

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“…Details of the trial procedures have been described in detail Fry et al, 2003), but briefly the trial groups were: Standard (regional) service Women were sent a family history form to complete. The family history form requested information about first-, second-and third-degree relatives.…”

Section: Methodsmentioning

confidence: 99%

“…A model of cancer genetic services has been proposed (Campbell et al, 1995Fry et al, 2003), whereby genetic nurse specialists could offer clinics within GP locality areas to carry out risk assessment, provide counselling for those whose risk was not significantly increased and mediate referral of those at higher risk to the specialist service. It was hoped that this would provide improved support to primary care and better services for those not at increased risk, while encouraging more cost-effective use of specialist resources for those at increased risk of developing breast cancer.…”

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Patient satisfaction with two different models of cancer genetic services in south-east Scotland

et al. 2004

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There is a need to integrate primary-and secondary-care cancer genetic services, but the most appropriate model of service delivery remains unclear. This study reports patients' expectations of breast cancer genetic services and a comparison of their satisfaction with two service models. In the first model, risk assessment was carried out using mailed family history data. Women estimated as being at high/moderate risk were offered an appointment at the familial breast cancer clinic, and those at low risk were sent a letter of reassurance. In the second model, all women were seen by a genetic nurse specialist, who assessed risk, referred high/moderate-risk women to the above clinic and discharged those at low risk. Over 60% of all women in the study regarded access to breast screening by mammogram and regular check-ups as very important. This underlines the demand for a multidisciplinary service providing both clinical genetic and surgical services. Satisfaction was high with both models of service, although significantly lower among women not at increased cancer risk and thus not offered a clinical check-up and mammography. Increased cancer worry was associated with a greater expressed need for information and for reassurance through follow-up clinical checks and mammography. Better targeting of counselling to the expressed concerns and needs of these women is required to improve the service offered. GPs and patients expressed no clear preference for any specific service location or staffing configuration. The novel community service was less expensive in terms of both staff and patient costs. The potential to decrease health staff/patient contact time and to employ nurse practitioners with both clinical genetic and oncology training should be explored further. The rapidly rising demand for these services suggests that the evaluation of further new models needs to continue to be given priority to guide the development of cancer genetic services.

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Risk Assessment, Genetic Counseling, and Genetic Testing forBRCA-Related Cancer

Owens

Davidson

Krist

et al. 2019

JAMA

345

121

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US Preventive Services Task Force IMPORTANCE Potentially harmful mutations of the breast cancer susceptibility 1 and 2 genes (BRCA1/2) are associated with increased risk for breast, ovarian, fallopian tube, and peritoneal cancer. For women in the United States, breast cancer is the most common cancer after nonmelanoma skin cancer and the second leading cause of cancer death. In the general population, BRCA1/2 mutations occur in an estimated 1 in 300 to 500 women and account for 5% to 10% of breast cancer cases and 15% of ovarian cancer cases. OBJECTIVE To update the 2013 US Preventive Services Task Force (USPSTF) recommendation on risk assessment, genetic counseling, and genetic testing for BRCA-related cancer. EVIDENCE REVIEW The USPSTF reviewed the evidence on risk assessment, genetic counseling, and genetic testing for potentially harmful BRCA1/2 mutations in asymptomatic women who have never been diagnosed with BRCA-related cancer, as well as those with a previous diagnosis of breast, ovarian, tubal, or peritoneal cancer who have completed treatment and are considered cancer free. In addition, the USPSTF reviewed interventions to reduce the risk for breast, ovarian, tubal, or peritoneal cancer in women with potentially harmful BRCA1/2 mutations, including intensive cancer screening, medications, and risk-reducing surgery. FINDINGS For women whose family or personal history is associated with an increased risk for harmful mutations in the BRCA1/2 genes, or who have an ancestry associated with BRCA1/2 gene mutations, there is adequate evidence that the benefits of risk assessment, genetic counseling, genetic testing, and interventions are moderate. For women whose personal or family history or ancestry is not associated with an increased risk for harmful mutations in the BRCA1/2 genes, there is adequate evidence that the benefits of risk assessment, genetic counseling, genetic testing, and interventions are small to none. Regardless of family or personal history, the USPSTF found adequate evidence that the overall harms of risk assessment, genetic counseling, genetic testing, and interventions are small to moderate. CONCLUSIONS AND RECOMMENDATION The USPSTF recommends that primary care clinicians assess women with a personal or family history of breast, ovarian, tubal, or peritoneal cancer or who have an ancestry associated with BRCA1/2 gene mutations with an appropriate brief familial risk assessment tool. Women with a positive result on the risk assessment tool should receive genetic counseling and, if indicated after counseling, genetic testing. (B recommendation) The USPSTF recommends against routine risk assessment, genetic counseling, or genetic testing for women whose personal or family history or ancestry is not associated with potentially harmful BRCA1/2 gene mutations. (D recommendation)

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

Cited by 44 publications

References 18 publications

Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials

Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials

Patient satisfaction with two different models of cancer genetic services in south-east Scotland

Risk Assessment, Genetic Counseling, and Genetic Testing forBRCA-Related Cancer

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