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

Torrance, Nicola; Mollison, Jill; Wordsworth, Sarah; Gray, Jonathon; Miedzybrodzka, Z; Haites, Neva Elizabeth; Grant, Adrian; Campbell, Marion K; Watson, Mags; Wilson, Brenda J.

doi:10.1038/sj.bjc.6603248

Cited by 31 publications

(26 citation statements)

References 37 publications

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“…There is a lack of research looking into what aspects of cancer genetic services patients value and how they would like services to be delivered. The only published exceptions are the work of Torrance et al [11] and Wilson et al [12].…”

Section: Introductionmentioning

confidence: 96%

“…Torrance et al [11] examined patient satisfaction as one of their secondary outcomes in their anxiety equivalence trials examining nurse counsellors as an alternative to consultants as breast cancer genetic counsellors. Patient satisfaction was high for both consultants and nurse counsellors in both the Grampian and Cardiff equivalence trial samples.…”

Section: Introductionmentioning

confidence: 99%

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Patient preferences and National Health Service costs: a cost-consequences analysis of cancer genetic services

et al. 2008

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The study has three aims; firstly to establish if, having been informed of their risk status and that gene testing is inappropriate for them, low and moderate risk patients have misunderstood or failed to grasp this and want a test that is inappropriate for them. Secondly, to elicit patients' willingness to pay for cancer genetic services. Thirdly, to ascertain the aspects of cancer genetics services that are important to high risk patients and present service configurations prioritised in terms of preferences accompanied by their costs (cost-consequences analysis). Patient preferences were gathered from 120 patients returning a self-administered discrete choice questionnaire issued post genetic risk assessment. Patients at low and moderate risk of developing breast cancer desired inappropriate testing. Patients at high, moderate and low risk of developing genetic cancer were willing to pay up to 3,000 pounds for genetic serviced, which exceeds the current estimated cost of providing testing and counselling. Counselling by a genetics associate accompanied by favourable levels of other attributes provided high utility and substantial cost savings.

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Section: Introductionmentioning

confidence: 96%

Section: Introductionmentioning

confidence: 99%

Patient preferences and National Health Service costs: a cost-consequences analysis of cancer genetic services

et al. 2008

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“…However, these studies found few significant differences between alternative service delivery methods. 6,7,9 Further modifications that have been introduced in the protocol-driven system include review of the patient questionnaire by a specialist genetic nurse, to ascertain which cancer diagnoses require confirmation. This process will result in further savings, where the verification of a diagnosis will not alter the management of the patient.…”

Section: Discussionmentioning

confidence: 99%

“…6 Patient access to surveillance, genetic testing and other care usually depends on the outcome of this counselling and risk assessment. 7 It is important that the counselling not only appropriately identifies women at increased genetic risk of breast cancer 8 to ensure appropriate referral for surveillance, but also identifies those women at low risk early, so as to reduce unnecessary anxiety. 9 Cancer risk counselling should also take into account patients' understanding of risk and modifying behaviours associated with cancer risk, emotional concerns, discussion of family communication strategies and potential family reactions.…”

Section: Introductionmentioning

confidence: 99%

Risk estimation for familial breast cancer: improving the system of counselling

et al. 2007

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Women with a family history of breast cancer dominate referrals for cancer genetic risk counselling across Europe. Given limited health care resources, managing this demand, while achieving good value for money for health services, is a major challenge. The paper reports the benefits and associated costs of moving from a traditional system of deriving family history of cancer during the patient's initial clinic attendance, to a protocol-driven system with pre-counselling assessment of family history. The evaluation was based on retrospective clinical data and a clinical audit. Changes in risk between referral and final risk assessment were ascertained and the cost difference between the two systems estimated. The study results showed that 14% of women assessed as 'low' genetic risk at referral were reassessed as 'moderate' or 'high' genetic risk for breast cancer following verification of family history. Sixteen per cent of those assessed as 'moderate' or 'high' genetic risk at referral were reassessed as 'low' genetic risk for breast cancer. Compared to the traditional system, the new protocol-driven system of risk assessment was more consistent, which reduced the number of return appointments and created time for clinicians to spend with other patients. The estimated cost of family history verification and genetic clinic appointment was calculated as d91.68 (h132.53) per family history, compared to d104.00 (h150.34) for the traditional system, representing a slight reduction in health service costs. Finally, the protocol-driven system can be used as part of ongoing audit for planning future genetics services in Scotland.

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“…An example of CMA in genetics is given by Torrance et al [32]. This randomised clinical trial compared genetic nurse counsellors with clinical geneticists for breast cancer risk genetic counselling.…”

Section: Economic Aspects Of Health Technologies and Gene Technologymentioning

confidence: 99%

EuroGentest: DNA-Based Testing for Heritable Disorders in Europe

Javaher

Kääriäinen

Kristoffersson

et al. 2008

Public Health Genomics

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Objectives: Regarding the recent attention to develop policies regarding the provision of clinical genetic testing services, access to, acceptance, utilisation and regulation of genetic services was investigated in selected European countries as well as one non-European country. Methods: Data were collected on the basis of relevant international reports and sources accessible via the internet, from self- designed, internationally administered surveys and with the help of a panel of experts from European countries participating in several workshops as well as from National European Societies of Human Genetics. Results: A selection of divergent health care systems was reviewed and compared (e.g. Finland, Germany, Portugal, Sweden, UK, France, Italy, Spain, Czech Republic, Lithuania and Serbia/Montenegro). For the evaluation of clinical validity and utility of genetic testing, background information was provided focussing on DNA-based testing for heritable disorders with a strong genetic component (usually due to the action of a single gene). Conclusions: There is great heterogeneity in genetic testing services among the countries surveyed. It is premature to mandate that genetic testing provided by clinical services meets professional standards regarding clinical validity and utility, because there is to date no consensus within the scientific community and among health care providers to what extent clinical validity and utility can and need to be assessed. Points to consider in the process of developing such standards are proposed.

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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

Cited by 31 publications

References 37 publications

Patient preferences and National Health Service costs: a cost-consequences analysis of cancer genetic services

Patient preferences and National Health Service costs: a cost-consequences analysis of cancer genetic services

Risk estimation for familial breast cancer: improving the system of counselling

EuroGentest: DNA-Based Testing for Heritable Disorders in Europe

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