Distress in couples approached for genetic counseling and BRCA1/2 testing during adjuvant radiotherapy.

OBJECTIVE: Breast cancer patients mostly rely on their partners for support in dealing with their cancer diagnosis and treatment. Genetic counseling and BRCA1/2 testing during primary treatment may add to demands made on their partners. This study aimed to gain insight into the extent of psychological distress in partners of recently diagnosed patients and to find factors to help identify couples vulnerable to high psychological distress after an active approach for genetic counseling. METHODS: Breast cancer patients and their partners (n=110) completed psychological distress measures (HADS and IES) prior to the approach for counseling (T0), after the approach (T1), and after leaving the genetic counseling protocol (T2). Couples not approached for counseling (n=85) completed similar questionnaires. RESULTS: Partners reported an equal or lower level of distress than patients, with a positive correlation between the two, although partners and patients differed in the course of their distress. Couples approached for genetic counseling did not differ in the level or course of either distress measure from not approached couples. A high baseline distress best predicts long-term high distress in patients and their partners. Younger patients were found to be particularly vulnerable. CONCLUSIONS: The approach for genetic counseling during adjuvant radiotherapy was not associated with extra psychological distress in partners or patients in the first year following the breast cancer diagnosis. A partner's long-term level of distress was significantly associated with that of the patient. Highly distressed patients with highly distressed partners were most likely to experience high distress in the long term.

BRCA1/2 mutation testing in breast cancer patients: a prospective study of the long-term psychological impact of approach during adjuvant radiotherapy.

This study assessed psychological distress during the first year after diagnosis in breast cancer patients approached for genetic counseling at the start of adjuvant radiotherapy and identified those vulnerable to long-term high distress. Of the approached patients some chose to receive a DNA test result (n = 58), some were approached but did not fulfill criteria for referral (n = 118) and some declined counseling and/or testing (n = 44). The comparative group consisted of patients not eligible for genetic counseling (n = 182) and was therefore not approached. Patients actively approached for genetic counseling showed no more long-term distress than patients not eligible for such counseling. There were no differences between the subgroups of approached patients. Predictors for long-term high distress or an increase in distress over time were pre-existing high distress and a low quality of life, having children, and having no family members with breast cancer. It is concluded that breast cancer patients can be systematically screened and approached for genetic counseling during adjuvant radiotherapy without imposing extra psychological burden. Patients vulnerable to long-term high distress already displayed high distress shortly after diagnosis with no influence of their medical treatment on their level of distress at long-term.

Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer.

PURPOSE: Little is known about reasons why eligible breast cancer patients decline BRCA mutation testing. They may withdraw at different stages during genetic counseling for different reasons. We prospectively studied perceived benefits and barriers to genetic counseling and BRCA testing in 102 newly diagnosed breast cancer patients approached for genetic counseling at the start of radiotherapy. METHODS: Patients completed questionnaires and participated in interviews at different stages of the counseling protocol. RESULTS: Participation was not influenced by distress, knowledge about hereditary breast cancer, previous genetic testing in relatives, or perceived risks and barriers. Immediate decliners (n = 23) do not believe genetic testing is relevant for them. Patients who decline after pedigree compilation (n = 14) are more hesitant and anxious about the influence of the test result on their future often wishing to postpone further testing. Late decliners (n = 7) withdraw afraid of the test result and/or after a relative's objection. These decliners are not easily identified upon approach because they are similar to patients who receive a DNA test result (n = 58). Notwithstanding their decline, 81% agreed to the timing or would have preferred an earlier approach for genetic counseling. CONCLUSION: Decliners may make more informed decisions after tailored health education, including adequate risk information.

Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer.

This prospective study assessed anxiety, depression and breast cancer-specific distress in recently diagnosed breast cancer patients before and after an active approach for genetic counselling at the beginning of adjuvant radiotherapy (mean: 52 days after surgery). Patients completed the hospital anxiety and depression scale (HADS) and the impact of event scale (IES). Psychological distress did not increase after the approach. High anxiety decreased in the comparison group (n=182), whereas breast cancer specific distress decreased in the approached group (n=220). It is concluded that breast cancer patients can be approached for genetic counselling shortly after surgery without additional short-term psychological burden. Patients who are young, single with little social support, less optimistic, use an avoiding coping style, experience a lower quality of life or who are highly distressed prior to approach for genetic counselling, need extra attention. Medical history did not prove to be relevant.

A literature review of the psychological impact of genetic testing on breast cancer patients.

OBJECTIVE: Easier access and increased awareness results in more referral for genetic testing for hereditary breast cancer in healthy at-risk women and breast cancer patients. To investigate the psychological impact of genetic testing on breast cancer patients, literature pertaining to this group was reviewed. METHOD: Medline and PsychInfo databases were searched over the period 1995-2004 for studies aimed at breast cancer patients referred for genetic testing. Qualitative and quantitative psychological outcome measures were identified. RESULTS: Eight papers were identified focusing on women affected by breast cancer and undergoing genetic counseling and DNA testing. CONCLUSION: Genetic testing does not lead to an increase in psychological distress in breast cancer patients. However, a recent breast cancer diagnosis adds to general and cancer-specific distress prior to genetic counseling and after DNA test disclosure. PRACTICE IMPLICATIONS: Clinicians need to be aware of possible high psychological distress and additional counseling needs of recently diagnosed breast cancer patients taking part in genetic testing. Further research should focus on patients who decline genetic counseling or receive an inconclusive test result, including age upon and time since diagnosis.