Why not to screen high-risk women anticipating BRCA1/BRCA2 testing for psychological distress.

Benazon, Nili R.; Coyne, James C.; Calzone, Kathleen A.; Weber, Barbara

doi:10.1037/0022-006x.70.1.258

Cited by 5 publications

(5 citation statements)

References 6 publications

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“…Yet it may be that the mental health issues associated with genetic testing for risk of breast and ovarian cancer are being overemphasized. Mental health screening and follow-up on positive screens can be costly, particularly given that the low specificity of screening instruments is such that most positive screens do not indicate a need for services [Coyne et al, 2000b;Benazon et al, 2002]. Resources that might otherwise be consumed in routine psychological screening or dedicated interventions may be better deployed in increasing the routine support and information available to individuals contemplating testing and in ensuring that decisions to obtain testing are informed, not coerced, and that the best use is made of the resulting information.…”

Section: Discussionmentioning

confidence: 99%

What do ratings of cancer‐specific distress mean among women at high risk of breast and ovarian cancer?

Coyne¹,

Kruus²,

Racioppo³

et al. 2002

American J of Med Genetics Pt A

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Women recruited from a hereditary cancer registry provided ratings of distress associated with different aspects of high-risk status and genetic testing and completed measures of general psychological distress, emotional and social health, and role functioning. Overall, high-risk status was rated as more distressing than undergoing genetic testing. Women without a personal history of cancer rated the level of distress associated with a positive test result to be greater than that associated with high-risk status. In contrast, level of distress associated with a positive test result was not significantly different from that associated with high-risk status for women with a personal history of cancer. Furthermore, women with a personal cancer history also anticipated that if they had an altered gene associated with increased risk of cancer, it would be less distressing than their diagnosis of cancer had been. Women with the highest ratings of cancer-related stress were less inclined to obtain testing, but were not more generally distressed or maladjusted. The need to interpret psychological distress and the stressfulness of genetic testing among high-risk women with respect to relevant comparison data is discussed.

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Section: Discussionmentioning

confidence: 99%

What do ratings of cancer‐specific distress mean among women at high risk of breast and ovarian cancer?

Coyne¹,

Kruus²,

Racioppo³

et al. 2002

American J of Med Genetics Pt A

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“…Until recently, psychologists and social workers with specific expertise in genetic counseling were frequently and intensively involved in the care of patients who received genetic counseling, for instance as standard procedure in genetic counseling in the Netherlands. It was assumed that genetic counseling may be a psychologically difficult process, which may evoke psychopathological levels of distress in some counselees (e.g., clinically diagnosed depression or anxiety), although the operationalization and the level of distress seemed to be a matter of debate (e.g., [3][4][5][6][7][8]). Recently, the support of a specialized psychologist or social worker is becoming a non-standard element of genetic counseling, especially regarding oncogenetics.…”

Section: Introductionmentioning

confidence: 99%

The counselees' self‐reported request for psychological help in genetic counseling for hereditary breast/ovarian cancer: not only psychopathology matters

et al. 2012

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Background Several studies have shown that counselees do not experience psychopathological levels of distress after DNA test result disclosure. However, it has not systematically been studied whether the absence of psychopathology also means that counselees do not want to receive help. Their self‐reported request for help may be related not only with psychopathology/distress but also with other psychological needs (e.g., surgery decisions), genetics‐specific needs (e.g., feeling vulnerable/stigmatized), and existential concerns (e.g., meaning in life). Methods Questionnaires were filled in by Dutch cancer patients, before and after disclosure of BRCA1/2 test results for hereditary breast/ovarian cancer: pathogenic mutation results (n = 30), uninformative results (n = 202), or unclassified variants (n = 16). Newly developed questions measured request for help, psychopathology was estimated with factor analyses on distress/psychopathology instruments, and several validated questionnaires measured other needs/concerns. Results One‐third of all counselees who reported a request for psychological help had actually received help. The level of psychopathology correlated between 0.34 and 0.44 with this self‐reported need‐for‐help. Other needs, genetics‐specific distress, and existential concerns correlated strongly/moderately with the counselees' self‐reported need‐for‐help. Examples of other needs were intention to undergo surgery, inaccuracy of their interpretation, the impact of cancer, and family communication difficulties. Genetics‐specific distress was for instance feeling vulnerable to develop cancer, stigma, and lack of mastery. Existential concerns were, among others, lack of purpose in life, low self‐acceptance, and an unfulfilled wish for certainty. Conclusions The request for help is related to multiple factors. Referral to psychosocial professionals may be improved by not only discussing psychopathology during genetic‐counseling sessions but also by other needs and existential concerns. Questions about other needs and existential issues may be added to psychological screening instruments. Copyright © 2012 John Wiley & Sons, Ltd.

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“…Yet it may be that the mental health issues associated with genetic testing for risk of breast and ovarian cancer are being overemphasized. Mental health screening and follow‐up on positive screens can be costly, particularly given that the low specificity of screening instruments is such that most positive screens do not indicate a need for services [Coyne et al, 2000b; Benazon et al, 2002]. Resources that might otherwise be consumed in routine psychological screening or dedicated interventions may be better deployed in increasing the routine support and information available to individuals contemplating testing and in ensuring that decisions to obtain testing are informed, not coerced, and that the best use is made of the resulting information.…”

Section: Discussionmentioning

confidence: 99%

Selective aromatase inhibition for patients with androgen‐independent prostate carcinoma

Smith

Kaufman

George

et al. 2002

Cancer

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Women recruited from a hereditary cancer registry provided ratings of distress associated with different aspects of high‐risk status and genetic testing and completed measures of general psychological distress, emotional and social health, and role functioning. Overall, high‐risk status was rated as more distressing than undergoing genetic testing. Women without a personal history of cancer rated the level of distress associated with a positive test result to be greater than that associated with high‐risk status. In contrast, level of distress associated with a positive test result was not significantly different from that associated with high‐risk status for women with a personal history of cancer. Furthermore, women with a personal cancer history also anticipated that if they had an altered gene associated with increased risk of cancer, it would be less distressing than their diagnosis of cancer had been. Women with the highest ratings of cancer‐related stress were less inclined to obtain testing, but were not more generally distressed or maladjusted. The need to interpret psychological distress and the stressfulness of genetic testing among high‐risk women with respect to relevant comparison data is discussed. © 2002 Wiley‐Liss, Inc.

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Why not to screen high-risk women anticipating BRCA1/BRCA2 testing for psychological distress.

Cited by 5 publications

References 6 publications

What do ratings of cancer‐specific distress mean among women at high risk of breast and ovarian cancer?

What do ratings of cancer‐specific distress mean among women at high risk of breast and ovarian cancer?

The counselees' self‐reported request for psychological help in genetic counseling for hereditary breast/ovarian cancer: not only psychopathology matters

Selective aromatase inhibition for patients with androgen‐independent prostate carcinoma

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