Perception of breast cancer risk and psychological distress in women attending a surveillance program

Gagnon, Pierre; Massie, Mary Jane; Kash, Kathryn M.; Gronert, Melissa K.; Heerdt, Alexandra S.; Brown, Karen; Sullivan, Margaret; Borgen, Patrick I.

doi:10.1002/(sici)1099-1611(199609)5:3<259::aid-pon204>3.0.co;2-o

Cited by 43 publications

(34 citation statements)

References 20 publications

(21 reference statements)

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“…However, further research would be needed to identify which specific information made the greatest contribution to this reduction. The results contrast those of a previous study in American women attending breast cancer genetic risk counselling where a written newsletter in addition to counselling was not shown to reduce breast-cancer-specific distress to a greater extent than counselling alone (Gagnon et al, 1996).…”

Section: Discussioncontrasting

confidence: 99%

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A randomised controlled trial of a psychoeducational intervention for women at increased risk of breast cancer

et al. 2004

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This study aimed to compare the impact of two versions of a psychoeducational written intervention on cancer worry and objective knowledge of breast cancer risk-related topics in women who had been living with an increased risk of familial breast cancer for several years. Participants were randomised to three conditions: scientific and psychosocial information pack (Group 1), scientific information pack only (Group 2) or standard care control (Group 3). They completed postal questionnaires at baseline (n ¼ 163) and 4 weeks (n ¼ 151). As predicted, there was a significant decrease in cancer worry for Group 1, but not Group 2. Objective knowledge significantly improved for both Group 1 and Group 2 as expected, but not Group 3. However, there was an unpredicted decline in cancer worry for Group 3. This study supports the value of a scientific and psychosocial information pack in providing upto-date information related to familial risk of breast cancer for long-term attendees of a familial breast cancer clinic. Further research is warranted to determine how the information pack could be incorporated into the existing clinical service, thus providing these women with the type of ongoing psychosocial support that many familial breast cancer clinics are currently lacking. British Journal of Cancer (2004) In recent years, growing numbers of women with a family history of breast cancer have sought genetic risk counselling to gain information about their risk of developing the disease. This increase in public awareness of family history as a risk factor for breast cancer results from scientific advances in understanding cancer genetics and growing media attention to breast cancer. Genetic testing for breast cancer susceptibility was initially expected to be widely available and informative for all women identified as being at increased risk due to family history. However, it is apparent that at present genetic testing is not an option for the majority of these women for whom a mutation in a known breast cancer susceptibility gene has not been identified in an affected relative. In the absence of proven methods to prevent or reduce the risk of breast cancer, the clinical management of these women is focused primarily on breast cancer screening.Large numbers of women under the age of 50 years are currently attending familial breast cancer clinics on a regular basis for clinical surveillance. As these women are faced with multiple chronic uncertainties regarding their personal risk of developing breast cancer and the effectiveness of risk management, the potential for adverse psychosocial effects is clear. However, psychosocial support or educational information out with regular breast cancer screening appointments (unless specifically requested) are not routinely provided for long-term attendees of many familial breast cancer clinics, including the South East Scotland familial breast cancer clinic in Edinburgh.There is limited psychosocial research in women who have been living with an increased risk of familial breast can...

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Section: Discussioncontrasting

confidence: 99%

“…Gagnon et al, 1996;Lerman et al, 1996;Cull et al, 1998;Schwartz et al, 1998;Watson et al, 1998;Audrain et al, 1999;Kash et al, 1999;Wellisch et al, 1999;Esplen et al, 2000). The studies of particular interest are those that have investigated the impact of psychoeducational group interventions in American women at high risk of breast cancer (i.e.…”

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A randomised controlled trial of a psychoeducational intervention for women at increased risk of breast cancer

et al. 2004

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“…Seven papers reported four randomized controlled trials [10-13, 16, 17], and one paper [15] reported a nonrandomized controlled trial, which was small (initial n=60) and suffered from considerable attrition. We included the evidence from 16 uncontrolled prospective studies [18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34] with that from the controlled trials because of the limited number of trials and the need to provide additional information regarding the potential effect of the intervention and to highlight contradictory effects between types of study design.…”

Section: Resultsmentioning

confidence: 99%

“…We report a systematic review of controlled trials [10][11][12][13][14][15][16][17] and prospective studies [18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34] examining the impact of genetic counseling for breast, ovarian, and colorectal cancer on a more comprehensive range of cognitive, affective, and behavioral outcomes than that reported in the earlier review [9]. In line with the definition of genetic counseling [7], we also tested the hypothesis that genetic counseling results in improvement in cognitive outcomes (the level and accuracy of risk perception and knowledge of cancer genetics) without a negative impact on affective outcomes (general distress and anxiety, depression, and cancer-specific worry).…”

Section: Introductionmentioning

confidence: 99%

Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis

et al. 2006

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“…This study was conducted against a background of data accruing from the US to show a substantial proportion of women with a family history of breast cancer with significant levels of psychological distress (Kash et al, 1992) and gross overestimates of their own cancer risk (Lerman et al, 1994a;Gagnon et al, 1996) even after risk counselling (Lerman et al, 1995). High levels of perceived susceptibility and associated anxiety have been shown to interfere with adherence to recommended surveillance programmes (Kash et al, 1992;Lerman et al, 1993).…”

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confidence: 99%

The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress

Anderson²,

et al. 1999

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There is a lack of formal scientific evidence on how best to manage women with a family history of breast cancer, in terms both of communicating about their risk of developing the disease and of advising about the optimal risk management strategy. It is vital that services offered to these women are adequately evaluated to inform future practice. This paper reports data from an ongoing longitudinal study of the knowledge, attitudes and behavioural and emotional responses of women attending a familial breast cancer clinic in SE Scotland. The clinic was established in 1992, and at that time there were no published psychological data available from the small number of similar clinics in the UK. We were aware of the subsequently published assessments from Manchester of womenÕs perceptions of their risk of developing breast cancer (Evans et al, 1993(Evans et al, , 1994. The same method of assessing risk perceptions was therefore adopted in this study. In spite of a subsequent proliferation of cancer risk counselling clinics there has remained a dearth of published reports evaluating the services offered.The concerns when our clinic opened were that the women seeking referral would be characterized by high anxiety and not necessarily at significantly increased risk. A further concern was that the process of counselling about cancer risk would be anxiety provoking, particularly for those who would be told that their risk was greater than they had previously thought. In the current state of knowledge, the information that can be given about individual risk and the efficacy of available risk management strategies is highly probabilistic. It was recognized that this uncertainty could also generate anxiety. Key issues were therefore to assess womenÕs perceptions of their risk of developing breast cancer and the psychological morbidity associated with cancer risk counselling.This study was conducted against a background of data accruing from the US to show a substantial proportion of women with a family history of breast cancer with significant levels of psychological distress (Kash et al, 1992) and gross overestimates of their own cancer risk (Lerman et al, 1994a;Gagnon et al, 1996) even after risk counselling (Lerman et al, 1995). High levels of perceived susceptibility and associated anxiety have been shown to interfere with adherence to recommended surveillance programmes (Kash et al, 1992;Lerman et al, 1993). The concern has also been expressed that some women will deal with their concerns by making ill-considered requests for genetic testing or prophylactic surgery (Lerman et al, 1994b). In the UK, Lloyd et al (1996) compared 62 genetic counsellees (with a family history of breast cancer) with a matched group of attenders at a general practitionerÕs (GP) surgery. They found these two groups of women to be similar in terms of the outcome measures used and concluded that the risk of breast cancer was not predictive of psychological morbidity. In this study, risk perceptions were recorded before counselling, but 58% of t...

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Perception of breast cancer risk and psychological distress in women attending a surveillance program

Cited by 43 publications

References 20 publications

A randomised controlled trial of a psychoeducational intervention for women at increased risk of breast cancer

A randomised controlled trial of a psychoeducational intervention for women at increased risk of breast cancer

Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis

The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress

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