Long‐term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance: a risk profile

Heijer, Mariska den; Seynaeve, Caroline; Vanheusden, Kathleen; Timman, Reinier; Duivenvoorden, Hugo J.; Tilanus-Linthorst, Madeleine M.A.; Menke-Pluijmers, Marian B. E.; Tibben, Aad

doi:10.1002/pon.3039

Cited by 31 publications

(52 citation statements)

References 31 publications

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“…51 Similar to the Meiser review, 34 those data also supported the use of baseline screening to identify risk factors for future distress, including current high distress levels, the presence of unresolved grief, passive coping styles, higher breast cancer risk perception, and greater frequency of breast selfexamination. 51 However, in some studies, an increase was observed in long-term distress among BRCA1/BRCA2 carriers. A 5-year prospective study by Graves et al demonstrated that women who were BRCA1/BRCA2 carriers reported greater genetic testing distress 91 measured according to the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire 92 regardless of their cancer status.…”

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 70%

“…90 The 5-year study included carriers, most of whom (91%) had undergone prophylactic surgery, which may have confounded the results. 90 However, another study of women who were at risk for hereditary breast cancer but who had not undergone prophylactic risk-reducing surgeries reported distress levels that were lower or similar to their baseline levels 5 to 8 years later 51 ; and all long-term distress was predicted by corresponding baseline levels of intrusion, avoidance, anxiety, and depression. 51 Similar to the Meiser review, 34 those data also supported the use of baseline screening to identify risk factors for future distress, including current high distress levels, the presence of unresolved grief, passive coping styles, higher breast cancer risk perception, and greater frequency of breast selfexamination.…”

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 98%

“…50 In a 2013 review of individuals who presented for predictive BRCA1/2 testing, individuals who were depressed were less likely to present for cancer genetic testing; and, if they were tested, then they were less likely to participate in follow-up (Table 1). 51 …”

Section: Psychiatric Predictors Of Genetic Testingmentioning

confidence: 99%

“…Passive coping, feeling helpless to deal with the stressor, and relying on others to resolve the stressful event or situation 79 have been associated with higher psychological distress in several studies. 51,75,80,81 Passive coping leads to unwillingness to take an active role in decisions about testing. Avoidant coping also is associated with distress over time, independent of both cancer history and test result.…”

Section: Risk Factors For Distressmentioning

confidence: 99%

“…Avoidant coping also is associated with distress over time, independent of both cancer history and test result. 82 Hopefulness and the fostering of reassuring thoughts 51 have been identified as predictors of future resilience and lower levels of anxiety and depression in individuals. 83 Perceived risk also plays an important role in predicting distress.…”

Section: Risk Factors For Distressmentioning

confidence: 99%

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Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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As genetic testing for hereditary cancer syndromes has transitioned from research to clinical settings, research regarding its accompanying psychosocial effects has grown. Men and women being tested for hereditary cancer syndromes may experience some psychological distress while going through the process of testing or after carrier status is identified. Psychological distress appears to decrease over the course of the first year and it is typically not clinically significant. Longer term studies show mixed results with some mutation carriers continuing to experience elevated distress. Baseline distress is the greatest risk factor for both immediate (weeks-12 months) and long-term psychological distress (18 mo-8 years post genetic testing). In addition to baseline psychological distress, other risk factors can be identified to help identify individuals who may need psychosocial interventions during the genetic testing process. The challenges of providing clinical care to the growing population of individuals identified to be at increased risk for heritable cancers present opportunities for research and new models of care. Cancer 2015;121:341-60. V C 2014 American Cancer Society.KEYWORDS: BRCA1, BRCA2, HNPCC, Lynch syndrome, genetic testing, unaffected carrier, carrier, hereditary cancer syndrome, riskreducing surgeries, psychosocial. INTRODUCTIONSeveral familial cancer syndromes that confer a high lifetime risk of cancer can be identified with genetic testing, and greater numbers of men and women will consider testing as the availability and public awareness of genetic testing for cancer susceptibility continue to increase. Research to date suggests that these individuals will have varied emotional responses to the process of genetic testing as well as its results.When genetic testing for cancer syndromes first transitioned from research protocols to clinics, there was initial concern that it would be similar to genetic testing for Huntington disease. Many worried that knowing they are at high risk for cancer in the future may be too distressing for some individuals, possibly even leading to suicide. However, several systematic reviews focusing primarily on hereditary breast and ovarian cancer (HBOC) and Lynch syndrome, also known as hereditary nonpolyposis colon cancer (HNPCC), have demonstrated that most individuals who have a mutation identified in an associated gene cope well with the knowledge of their genetic status. 1-3 Data regarding psychological implications of the genetic testing process are the most robust for women who present for HBOC risk assessment, which involves discussion of the BRCA1 and BRCA2 genes, although there are increasing studies for HNPCC, familial adenomatous polyposis (FAP), and other hereditary cancer syndromes.Although the rates of distress in individuals undergoing genetic testing vary, they appear to be relatively small. Studies have demonstrated that approximately 6% to 24% of individuals undergoing genetic testing for a BRCA1/BRCA2-associated or HNPCC-associated mutations repo...

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Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 70%

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 98%

Section: Psychiatric Predictors Of Genetic Testingmentioning

confidence: 99%

Section: Risk Factors For Distressmentioning

confidence: 99%

Section: Risk Factors For Distressmentioning

confidence: 99%

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Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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Risk Assessment, Genetic Counseling, and Genetic Testing forBRCA-Related Cancer in Women

Nelson

Pappas

Cantor

et al. 2019

JAMA

114

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IMPORTANCE Pathogenic mutations in breast cancer susceptibility genes BRCA1 and BRCA2 increase risks for breast, ovarian, fallopian tube, and peritoneal cancer in women; interventions reduce risk in mutation carriers. OBJECTIVE To update the 2013 US Preventive Services Task Force review on benefits and harms of risk assessment, genetic counseling, and genetic testing for BRCA1/2-related cancer in women.

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The impact of having a sister diagnosed with breast cancer on cancer‐related distress and breast cancer risk perception

Metcalfe

Quan

Eisen

et al. 2013

Cancer

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BACKGROUND: A family history of breast cancer has been shown to affect psychosocial functioning. However, the majority of research has focused on the daughters of patients with breast cancer and families with multiple relatives with the disease. The purpose of the current study was to examine cancer-related distress and breast cancer risk perception, and further examine the predictors of these outcomes, in the sisters of newly diagnosed patients with breast cancer without a previous family history of the disease. METHODS: Sisters of newly diagnosed index breast cancer patients were identified and asked to complete a study-specific questionnaire (demographics and cancer risk perception) and the Impact of Events Scale. Pathological information was abstracted from the medical chart for the index breast cancer patients. RESULTS: A total of 205 sisters completed the questionnaires. The mean time between breast cancer diagnosis and the sisters' completion of the questionnaire was 9.8 months. Approximately one-half of the women scored in the moderate or severe distress range. The most significant predictor of cancer-related distress was perceived lifetime breast cancer risk (P ¼ .04). Women with a lifetime risk of breast cancer > 20% were more than twice as likely to have moderate or severe distress compared with those with a lifetime risk of < 20%. CONCLUSIONS: Cancer-related distress is high in the sisters of newly diagnosed patients with breast cancer in whom there is no other family history of breast cancer. Specifically, women with a perceived lifetime risk of breast cancer of > 20% experienced the highest levels of distress. Future interventions that target this group should be considered.

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Long‐term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance: a risk profile

Abstract: On the basis of the identified risk profile, it is possible to identify vulnerable women at an early stage, who then may be offered additional and individually tailored support.

Cited by 31 publications

References 31 publications

Psychiatric implications of cancer genetic testing

Psychiatric implications of cancer genetic testing

Risk Assessment, Genetic Counseling, and Genetic Testing forBRCA-Related Cancer in Women

The impact of having a sister diagnosed with breast cancer on cancer‐related distress and breast cancer risk perception

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