GPs' views on their role in cancer genetics services and current practice

Fry, Alison; Campbell, Harry; Gudmundsdóttir, Hafrún; Rush, Robert; Porteous, Mary; Gorman, Dermot; Cull, Ann

doi:10.1093/fampra/16.5.468

Cited by 124 publications

(119 citation statements)

References 14 publications

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“…Patients with chronic diseases preferred their GP as source of genetic information, and to a lesser degree information sheets, medical specialists, and the media [28,29]. As a family doctor, the GP is in a good position to provide genetic information [37], which is something GPs themselves agree with [38,39]. Unfortunately, GPs feel unconfident about their ability to do so, as their genetic expertise falls short [38][39][40].…”

Section: Discussionmentioning

confidence: 99%

“…As a family doctor, the GP is in a good position to provide genetic information [37], which is something GPs themselves agree with [38,39]. Unfortunately, GPs feel unconfident about their ability to do so, as their genetic expertise falls short [38][39][40]. The Netherlands Ministry of Health, Welfare and Sport acknowledges that health care providers lack the knowledge and skills to adequately provide genetic information.…”

Section: Discussionmentioning

confidence: 99%

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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

111

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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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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

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

111

163

View full text Add to dashboard Cite

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“…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).…”

Section: Discussionmentioning

confidence: 99%

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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“…In reality, however, general practitioners (GPs) find this 'gatekeeper' role difficult, both in the UK (Fry et al, 1999;Bankhead et al, 2001;Rose et al, 2001;Walter et al, 2001;Elwyn et al, 2002;Campbell et al, 2003) and elsewhere (Escher and Sappino, 2000). The proportion of referrals to breast cancer family clinics that fall below the required risk threshold has been reported as almost 25% in one large UK-wide survey (Wonderling et al, 2001).…”

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confidence: 99%

Familial breast cancer: management of ‘lower risk’ referrals

et al. 2006

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Up to 40% of referrals from primary care to 'breast cancer family clinics' prove to be of women whose assessed risk falls below the guidelines' threshold for management in secondary or tertiary care, despite recommendations that they should be screened out at primary care level. A randomised trial, involving 87 such women referred to the Tayside Familial Breast Cancer Service compared two ways of communicating risk information, letter or personal interview. Both were found to be acceptable to referred women and to their family doctors, although the former expressed a slight preference for interview. Only four women returned to their family doctors with continuing concerns about breast cancer. Nevertheless, understanding of information provided by either route was unsatisfactory, with apparent confusion about both absolute and relative risks of breast cancer. Substantial minorities appear to believe that they are at no increased risk at all, or even below the population level of risk, while others remain convinced that their personal risk has been underestimated. Family history record forms, completed by the referred women, preferably with the assistance of relatives, are crucial to full assessment of familial risk but one quarter of women referred to the Tayside Familial Breast Cancer Service currently do not complete and return these forms ahead of their clinic appointment. Further collaboration between primary care and the Breast Cancer Family Service is required to improve provision for concerned women whose risks fall below the threshold for special surveillance and to maximise effective use of the family history record form.

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GPs' views on their role in cancer genetics services and current practice

Cited by 124 publications

References 14 publications

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

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

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

Familial breast cancer: management of ‘lower risk’ referrals

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