Surreal illustration symbolizing genetic testing for women's health.

Genetic Testing for Cancer: Balancing Benefits and Distress in Women's Health

"Understanding the Emotional Impact of BRCA1/2 Testing Without Pre-Test Counseling"


Genetic testing for cancer risk is becoming increasingly common, especially for women diagnosed with breast or ovarian cancer. These tests, particularly for BRCA1/2 genes, can reveal vital information that influences treatment decisions and preventive measures. However, receiving such information without adequate preparation can be emotionally challenging.

Traditionally, genetic testing involves pre-test counseling to help individuals understand the implications of the test results and cope with potential emotional distress. Yet, in many modern cancer clinics, BRCA1/2 testing is performed shortly after diagnosis, often without this crucial counseling step. This shift raises concerns about the psychological impact on women already grappling with a new cancer diagnosis.

A recent study published in Acta Oncologica sheds light on the experiences of women undergoing BRCA1/2 testing without pre-test genetic counseling. The research investigates the levels, course, and predictors of cancer-related distress in these women, providing valuable insights for healthcare professionals and individuals considering genetic testing.

What the Study Revealed About Distress and Genetic Testing

Surreal illustration symbolizing genetic testing for women's health.

The study, led by Hildegunn Høberg-Vetti and colleagues, involved 309 women—259 with breast cancer and 50 with ovarian cancer—who underwent BRCA1/2 testing shortly after their diagnosis. These women did not receive pre-test genetic counseling. The researchers measured cancer-related distress using the Impact of Event Scale (IES) before and after genetic testing to assess intrusion and avoidance symptoms.

Intrusion refers to the unwelcome and disruptive thoughts and images related to the cancer diagnosis and genetic testing process. Avoidance encompasses the behaviors and emotional responses aimed at evading these distressing thoughts and feelings. The study tracked these symptoms to understand the emotional journey of women facing genetic testing.

  • Overall Distress Levels: The study found that the women experienced moderate levels of intrusion and avoidance symptoms both before and after genetic testing.
  • Distress Reduction: There was a statistically significant decline in these symptoms over time, suggesting that women gradually adapted to the information and their situation.
  • Predictors of Higher Distress: Certain factors were associated with higher levels of distress:
    • Younger age
    • Shorter time since diagnosis
    • Lower levels of perceived social support
    • Diagnosis of ovarian cancer
    • Higher levels of decisional conflict regarding genetic testing
    • Living without a partner
These findings highlight the importance of considering individual circumstances when offering genetic testing to women with cancer. Younger women, those with less social support, and those facing greater uncertainty about the testing decision may require additional support to manage their distress.

What This Means for Women and Healthcare Providers

The study underscores that women undergoing genetic testing shortly after a cancer diagnosis experience a moderate level of cancer-related distress. While this distress tends to decrease over time, certain factors can amplify it. Healthcare providers should be aware of these predictors—younger age, less social support, decisional conflict, and living without a partner—to identify women who may need additional support.

About this Article -

This article was crafted using a human-AI hybrid and collaborative approach. AI assisted our team with initial drafting, research insights, identifying key questions, and image generation. Our human editors guided topic selection, defined the angle, structured the content, ensured factual accuracy and relevance, refined the tone, and conducted thorough editing to deliver helpful, high-quality information.See our About page for more information.

This article is based on research published under:

DOI-LINK: 10.1080/0284186x.2018.1502466, Alternate LINK

Title: Cancer-Related Distress In Unselected Women With Newly Diagnosed Breast Or Ovarian Cancer Undergoing Brca1/2 Testing Without Pretest Genetic Counseling

Subject: Radiology, Nuclear Medicine and imaging

Journal: Acta Oncologica

Publisher: Informa UK Limited

Authors: Hildegunn Høberg-Vetti, Geir Egil Eide, Elen Siglen, Wenche Listøl, Marianne Tveit Haavind, Nicoline Hoogerbrugge, Cathrine Bjorvatn

Published: 2018-10-18

Everything You Need To Know

1

Why is there concern about women undergoing BRCA1/2 genetic testing shortly after a cancer diagnosis without pre-test counseling?

BRCA1/2 genetic testing is often conducted soon after a breast or ovarian cancer diagnosis, sometimes without pre-test counseling. This is concerning because pre-test counseling helps individuals understand the test's implications and cope with potential emotional distress. Without it, women may face challenges understanding the results and their impact on treatment and prevention.

2

How did the *Acta Oncologica* study measure cancer-related distress in women undergoing BRCA1/2 testing?

The study utilized the Impact of Event Scale (IES) to measure cancer-related distress. This scale assesses intrusion, which are unwelcome thoughts and images related to the diagnosis and testing, and avoidance, which involves behaviors to evade these distressing thoughts and feelings. Researchers tracked these symptoms to understand the emotional journey.

3

What were the general distress levels observed in the study, and what factors predicted higher distress among women undergoing BRCA1/2 testing?

The research indicated that women generally experienced moderate levels of intrusion and avoidance symptoms. The study also revealed that certain factors, such as younger age, shorter time since diagnosis, lower social support, ovarian cancer diagnosis, higher decisional conflict, and living without a partner, were associated with higher distress levels. The study did not focus on specific interventions, but the results suggest tailoring support based on these factors could be beneficial.

4

What should healthcare providers consider when offering BRCA1/2 genetic testing to women, based on the study's findings about cancer-related distress?

For healthcare providers, understanding these predictors is crucial. Younger women, those with less social support, those experiencing decisional conflict about testing, and those living without a partner may require additional support. Implementing strategies like enhanced counseling, support groups, or decision aids could help these women manage their distress effectively. The study did not evaluate the effectiveness of specific interventions, highlighting an area for further research.

5

Did the study reveal any positive trends in cancer-related distress, and what are the remaining gaps in understanding the psychological impact of BRCA1/2 testing without pre-test counseling?

The study showed a decline in intrusion and avoidance symptoms over time, suggesting adaptation. However, it's important to note that this adaptation occurred without pre-test counseling, which might not be optimal. While the study identified predictors of distress, it didn't explore the long-term psychological impact or the effectiveness of interventions. Future research should investigate these aspects to enhance the care and support provided to women undergoing genetic testing for cancer risk.

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