The DOI matches its Crossref record; 50 of the 52 references it cites were found in a registry or an index.
Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study
Abstract
Purpose: To explore long-term psychosocial consequences of carrying a BRCA1/2 mutation and to identify possible risk factors for long-term psychological distress. Patients and Methods: Five years after genetic test disclosure, 65 female participants (23 carriers, 42 noncarriers) of our psychological follow-up study completed a questionnaire and 51 participants were interviewed. We assessed general and hereditary cancer-related distress, risk perception, openness to discuss the test result with relatives, body image and sexual functioning. Results: Carriers did not differ from noncarriers on several distress measures and both groups showed a significant increase in anxiety and depression from 1 to 5 years follow-up. Carriers having undergone prophylactic surgery (21 of 23 carriers) had a less favorable body image than noncarriers and 70% reported changes in the sexual relationship. A major psychological benefit of prophylactic surgery was a reduction in the fear of developing cancer. Predictors of long-term distress were hereditary cancer-related distress at blood sampling, having young children, and having lost a relative to breast/ovarian cancer. Long-term distress was also associated with less open communication about the test result within the family, changes in relationships with relatives, doubting about the validity of the test result, and higher risk perception. Conclusion: Our findings support the emerging consensus that genetic predisposition testing for BRCA1/2 does not pose major mental health risks, but our findings also show that the impact of prophylactic surgery on aspects such as body image and sexuality should not be underestimated, and that some women are at risk for high distress, and as a result, need more attentive care.
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“Post-surgical distress appeared to be related to surgical complications, perceived risk of breast cancer, having young children, and psychiatric history [11-14].”
From Standard psychological consultations and follow up for women at increased risk of hereditary breast cancer considering prophylactic mastectomy (2009) · cites this paper as [11]
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The Impact of Caregiving on the Psychological Well-Being of Family Caregivers and Cancer Patients
Northouse, L. L., Katapodi, M. C., Schafenacker, A. M., & Weiss, D. (2012) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2012.09.006 · Cited by 428
Prophylactic mastectomy for the prevention of breast cancer
Lostumbo, L., Carbine, N. E., & Wallace, J. (2010) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd002748.pub3 · Cited by 402
A systematic review of perceived risks, psychological and behavioral impacts of genetic testing
Heshka, J., Palleschi, C., Howley, H. E. A., Wilson, B. J., & Wells, P. S. (2008) · Genetics in Medicine · doi:10.1097/gim.0b013e31815f524f · Cited by 327
D, R. S. M., Basson, R. J., Krychman, M., Morales, A. M., Schover, L. R., Wang, R., & Incrocci, L. (2010) · The Journal of Sexual Medicine · doi:10.1111/j.1743-6109.2009.01620.x · Cited by 310
Psychological impact of genetic testing for cancer susceptibility: an update of the literature
Meiser, B. (2005) · Psycho-Oncology · doi:10.1002/pon.933 · Cited by 293
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BackgroundInfluential
Metadata
- Authors
- van Oostrom, I., Meijers-Heijboer, H., Lodder, L. N., Duivenvoorden, H. J., van Gool, A. R., Seynaeve, C., van der Meer, C. A., Klijn, J. G. M., van Geel, B. N., Burger, C. W., Wladimiroff, J. W., & Tibben, A.
- Affiliations
- From the Departments of Clinical Genetics, Medical Psychology and Psychotherapy, Medical Oncology, Surgical Oncology, Gynecology and Psychiatry, Erasmus MC, Rotterdam; Center of Human and Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands.
- Leiden University Medical Center (NL)
- Venue
- Journal of Clinical Oncology
- Published
- 2003-10-15
- Volume
- 21
- Issue
- 20
- Pages
- 3867-3874
- ISSN
- 0732-183X (ISSN-L)
- 1527-7755
- OpenAlex
- W2123915321
- Cited by
- 281
- References
- 52
- Citations by year
- 2026: 3 · 2025: 5 · 2024: 5 · 2023: 5 · 2022: 5 · 2021: 3 · 2020: 4 · 2019: 9 · 2018: 6 · 2017: 10 · 2016: 11 · 2015: 13 · 2014: 14 · 2013: 22 · 2012: 20
- FWCI
- 7.83
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Clinical Oncology (publishedVersion)
- PubMed (publishedVersion)
- Pure Amsterdam UMC (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
- Social Sciences › Psychology › Clinical Psychology › Family Support in Illness
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- BRCA1/2 mutation carriers, prophylactic surgery, psychological distress, anxiety, depression, body image, sexual function, risk perception, disclosure of genetic test results, family communication, breast cancer, ovarian cancer, risk factors for distress
- MeSH terms
- Adult, Anxiety, Body Image, Depression, Female, Genetic Testing, Genetic Carrier Screening, Humans, Mastectomy, Middle Aged, Mutation, Risk Factors, Sexual Behavior, Time Factors, Genes, BRCA1, Genetic Predisposition to Disease, Genes, BRCA2
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