Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer

Hopwood, Penelope

doi:10.1136/jmg.38.2.139

Cited by 104 publications

(100 citation statements)

References 13 publications

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“…This is comparable to the findings in other samples of women prior to genetic risk counselling using the same measure and threshold (Cull et al, 1999 and to published data from the general population (Goldberg and Williams, 1988). Mean scores on the Cancer Worry Scale were similar to those reported in women prior to genetic risk counselling by Watson et al (1998) and Brain et al (2000) and slightly lower than those reported by Hopwood et al (2001) and Bish et al (2002).…”

Section: Discussionsupporting

confidence: 77%

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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: Discussionsupporting

confidence: 77%

“…Total scores range from 6 to 24 where a higher score indicates higher levels of worry. The psychometric properties of the scale have been shown to be satisfactory (Brain et al, 1999;Hopwood et al, 2001). …”

Section: Psychological Distressmentioning

confidence: 99%

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

et al. 2003

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“…empathetic, or gained from subjective experiences, i.e. embodied, has been demonstrated to influence understanding of factual information, risk perception, cancer-related worry, and long-term anxiety in families with hereditary cancer (d'Agincourt-Canning, 2005;Hopwood et al,, 2001). Recent data from HNPCC families also suggest that individuals who have experience from or who have lost close relatives to cancer, particularly if several family members have been affected or if these experiences were gained at young age, are psychologically vulnerable (Esplen et al, 2003;van Oostrom et al, 2006avan Oostrom et al, , , 2006b).…”

Section: Discussionmentioning

confidence: 99%

Living with Hereditary Non‐polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Carlsson

Nilbert

2007

Journal of Genetic Counseling

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Hereditary nonpolyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live with knowledge about HNPCC carrier status. We conducted an interview study in order to investigate the perceived impact on life after genetic testing for HNPCC. Three themes emerged; reactions and emotions, family relations, and implications and strategies. The informants referred to experiential knowledge of cancer, information responsibilities, impact on family relations, and coping strategies. Most informants had suspected hereditary cancer, but confirmation hereof was described as an overwhelming experience and often brought about changes in life. We suggest that the importance's identified, e.g. the impact of experiential knowledge and the impact on family relations, should be taken into account during genetic counselling in order to facilitate information spread and prepare family members for the impact that the genetic knowledge may have on life.

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“…It was found that adolescent daughters of women with a poor survival prognosis were at greatest risk for adverse emotional outcome. These daughters were more likely to report long-term life-span changes and role changes with their mothers (68,69). Erblich et al (70) stress the importance of care-giving by women whose mothers were dying of breast cancer.…”

Section: Psychological Support Needsmentioning

confidence: 99%

Psychosocial Issues in Cancer Genetics

2003

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Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer

Cited by 104 publications

References 13 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

Living with Hereditary Non‐polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing

Psychosocial Issues in Cancer Genetics

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