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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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“This systematic review shows that only one study assessed the long-term psychological impact of genetic testing for cancer susceptibility (van Oostrom et al., 2003).”
BackgroundInfluentialRisk-reducing mastectomy for the prevention of primary breast cancer
Carbine, N. E., Lostumbo, L., Wallace, J., & Ko, H. (2018) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd002748.pub4 · Cited by 270
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Cost-Effectiveness of Preventive Strategies for Women with a BRCA1 or a BRCA2 Mutation
Anderson, K. N., Jacobson, J. S., Heitjan, D. F., Zivin, J. G., Hershman, D. L., Neugut, A. I., & Grann, V. R. (2006) · Annals of Internal Medicine · doi:10.7326/0003-4819-144-6-200603210-00006 · Cited by 151
Risk Assessment, Genetic Counseling, and Genetic Testing forBRCA-Related Cancer in Women
Nelson, H. D., Pappas, M., Cantor, A. G., Haney, E. M., & Holmes, R. S. (2019) · JAMA · doi:10.1001/jama.2019.8430 · Cited by 156
Predictive testing for Huntington's disease
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Self-citationSimple Strategies for Vaginal Health Promotion in Cancer Survivors
Carter, J., Goldfrank, D. J., & Schover, L. R. (2010) · The Journal of Sexual Medicine · doi:10.1111/j.1743-6109.2010.01988.x · Cited by 138
Carter, J., Stabile, C., Gunn, A., & Sonoda, Y. (2013) · The Journal of Sexual Medicine · doi:10.1111/jsm.12002 · Cited by 130
Psychological interventions for the sexual sequelae of cancer: A review of the literature
Brotto, L. A., Yule, M. A., & Breckon, E. (2010) · Journal of Cancer Survivorship · doi:10.1007/s11764-010-0132-z · Cited by 123
“Many women who underwent prophylactic ovarian removal did not report sexual problems post-surgery, but those who were not in a sexual relationship before surgery were reluctant to begin one due to negative cognitions (e.g., sex is not important) and sexual avoidance [ 24 ].”
BackgroundAlternate Service Delivery Models in Cancer Genetic Counseling: A Mini-Review
Buchanan, A. H., Rahm, A. K., & Williams, J. L. (2016) · Frontiers in Oncology · doi:10.3389/fonc.2016.00120 · Cited by 125
Gopie, J. P., Mureau, M. A. M., Seynaeve, C., ter Kuile, M. M., Menke‐Pluymers, M. B. E., Timman, R., & Tibben, A. (2012) · Familial Cancer · doi:10.1007/s10689-012-9588-5 · Cited by 118
Self-citationSatisfaction with Prophylactic Mastectomy and Breast Reconstruction in Genetically Predisposed Women
Bresser, P. J. C., Seynaeve, C., Gool, A. R. V., Brekelmans, C. T. M., Meijers-Heijboer, H. E. J., van Geel, A. N., Menke‐Pluijmers, M. B. E., Duivenvoorden, H. J., Klijn, J. G. M., & Tibben, A. (2006) · Plastic & Reconstructive Surgery · doi:10.1097/01.prs.0000217383.99038.f5 · Cited by 117
“Feeling insufficiently informed 43 10 (23) 68 6 (9) 0.”
Self-citationRingwald, J., Wochnowski, C., Bosse, K., Giel, K. E., Schäffeler, N., Zipfel, S., & Teufel, M. (2016) · Journal of Genetic Counseling · doi:10.1007/s10897-016-9949-6 · Cited by 114
“…diagnosis the mutation carriers are forced to make treatment decisions like regular surveillance, prophylactic surgery or preventive chemotherapy and can experience the anguish of informing their relatives about the test results (Douglas et al. 2009; MacDonald et al. 2010; van Oostrom et al. 2003).”
BackgroundGenetic susceptibility testing from a stress and coping perspective
Gooding, H. C., Organista, K. C., Burack, J. H., & Biesecker, B. B. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.08.041 · Cited by 107
Randall, L. M., Pothuri, B., Swisher, E. M., Diaz, J. P., Buchanan, A. H., Witkop, C., Powell, C. B., Smith, E. B., Robson, M. E., Boyd, J. A., et al. (2017) · Gynecologic Oncology · doi:10.1016/j.ygyno.2017.06.002 · Cited by 107
Outcome Measurement in Clinical Genetics Services: A Systematic Review of Validated Measures
Payne, K., Nicholls, S. G., McAllister, M., MacLeod, R., Donnai, D., & Davies, L. M. (2007) · Value in Health · doi:10.1111/j.1524-4733.2007.00259.x · Cited by 99
“Van Oostrum et al. used the Openness to Discuss Cancer in the Family Scale to explore the impact of carrying a BRCA1/2 mutation in the family [ 63 ].”
BackgroundMethodThe emotional effects of genetic diseases: Implications for clinical genetics
McAllister, M., Davies, L. M., Payne, K., Nicholls, S. G., Donnai, D., & MacLeod, R. (2007) · American Journal of Medical Genetics Part A · doi:10.1002/ajmg.a.32013 · Cited by 104
“This finding supports the suggestion [e.g., McAllister, 2002; Van Oostrom et al., 2003] that anxiety levels in relation to genetic conditions can fluctuate over time.”
BackgroundResultOutcomes of interest in evidence-based evaluations of genetic tests
Botkin, J. R., Teutsch, S. M., Kaye, C. I., Hayes, M., Haddow, J. E., Bradley, L. A., Szegda, K., & Dotson, W. D. (2010) · Genetics in Medicine · doi:10.1097/gim.0b013e3181cdde04 · Cited by 90
Psychological distress and quality of life associated with genetic testing for breast cancer risk
Smith, A., Dougall, A., Posluszny, D., Somers, T. J., Rubinstein, W., & Baum, A. (2008) · Psycho-Oncology · doi:10.1002/pon.1291 · Cited by 99
Douglas, H., Hamilton, R. J., & Grubs, R. (2009) · Journal of Genetic Counseling · doi:10.1007/s10897-009-9232-1 · Cited by 91
“Several studies have investigated the psychosocial effects of BRCA testing (Watson et al. 2004; Hallowell et al. 2004; Van Dijk et al. 2004; Van Oostrom et al. 2003), but few of these have addressed the complexity that family cancer history and family members themselves bring to the decision to…”
BackgroundBecker, S. M., Cazares, L. H., Watson, P. A., Lynch, H. T., Semmes, O. J., Drake, R. R., & Laronga, C. (2004) · Annals of Surgical Oncology · doi:10.1245/aso.2004.03.557 · Cited by 87
Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up
Foster, C., Watson, M., Eeles, R., Eccles, D., Ashley, S., Davidson, R., Mackay, J., Morrison, P., Hopwood, P., & Evans, D. (2007) · British Journal of Cancer · doi:10.1038/sj.bjc.6603610 · Cited by 87
“The BRRM rate is higher than in the USA (Lerman et al, 2000; Scheuer et al, 2002; Botkin et al, 2003; Schwartz et al, 2003) and lower than in the Netherlands at 1–2 years (Meijers-Heijboer et al, 2000; Lodder et al, 2002) and 5 years post-testing (van Oostrom et al, 2003).”
BackgroundResultInfluentialden Heijer, M., Seynaeve, C., Timman, R., Duivenvoorden, H. J., Vanheusden, K., Tilanus‐Linthorst, M. M. A., Menke‐Pluijmers, M. B. E., & Tibben, A. (2011) · European Journal of Cancer · doi:10.1016/j.ejca.2011.10.020 · Cited by 82
Self-citationKasparian, N. A., Wakefield, C. E., & Meiser, B. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-007-9111-6 · Cited by 81
Pieterse, A., van Dulmen, A., Beemer, F., Bensing, J., & Ausems, M. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9048-1 · Cited by 87
“Anxiety was measured with the state version of the State-Trait Anxiety Inventory (STAI; 10 items) (Van der Ploeg et al., 1980).”
InfluentialThe Trajectory of Psychological Impact in BRCA1/2 Genetic Testing: Does Time Heal?
Beran, T. M., Stanton, A. L., Kwan, L. C., Seldon, J. L., Bower, J. E., Vodermaier, A., & Ganz, P. A. (2008) · Annals of Behavioral Medicine · doi:10.1007/s12160-008-9060-9 · Cited by 83
“One study [ 48 ] of 65 women revealed that anxiety and depressive symptoms increased significantly in BRCA1/2� and BRCA1/2+ women from 1 year to approximately 5 years after testing, predicted by cancer-specific distress, having lost a relative to breast/ ovarian cancer, less open communication about the test result, a…”
BackgroundTolerance for uncertainty and perceived risk among women receiving uninformativeBRCA1/2test results
O’Neill, S. C., DeMarco, T. A., Peshkin, B. N., Rogers, S., Rispoli, J., Brown, K., Valdimarsdottir, H. B., & Schwartz, M. D. (2006) · American Journal of Medical Genetics Part C Seminars in Medical Genetics · doi:10.1002/ajmg.c.30104 · Cited by 79
“Previous studies indicate that, as a group, women receiving BRCA1/2 testing do not report significantly increased distress following the disclosure of test results [Schwartz et al., 2002; Coyne et al., 2003; van Oostrom et al., 2003].”
BackgroundHigh satisfaction rates in women after DIEP flap breast reconstruction
Damen, T. H. C., Timman, R., Kunst, E. H., Gopie, J. P., Bresser, P. J. C., Seynaeve, C., Menke‐Pluijmers, M. B. E., Mureau, M. A. M., Hofer, S. O. P., & Tibben, A. (2008) · Journal of Plastic Reconstructive & Aesthetic Surgery · doi:10.1016/j.bjps.2008.08.019 · Cited by 79
Self-citationvan Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker-Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · Clinical Genetics · doi:10.1111/j.1399-0004.2007.00731.x · Cited by 76
“This was assessed by the Openness to Discuss Hereditary Cancer in the Family Scale (7, 22).”
BackgroundMethodInfluentialSelf-citationClaes, E., Evers‐Kiebooms, G., Denayer, L., Decruyenaere, M., Boogaerts, A., Philippe, K., & Legius, E. (2005) · Journal of Genetic Counseling · doi:10.1007/s10897-005-1371-4 · Cited by 75
“At present, the risk factor that is most commonly identified in studies on emotional impact of genetic testing, is predisclosure distress (Croyle et al., 1997; Lodder et al., 2000; Tercyak et al., 2001; Van Oostrom et al., 2003) and this was also the case in our study.”
BackgroundResultInfluentialSexual Oncology: Sexual Health Issues in Women with Cancer
Krychman, M., Pereira, L., Carter, J., & Amsterdam, A. (2006) · Oncology · doi:10.1159/000100521 · Cited by 74
Graves, K. D., Vegella, P. L., Poggi, E. A., Peshkin, B. N., Tong, A., Isaacs, C. J., Finch, C., Kelly, S. P., Taylor, K. L., Luta, G., et al. (2012) · Cancer Epidemiology Biomarkers & Prevention · doi:10.1158/1055-9965.epi-11-0991 · Cited by 74
“on psychosocial outcomes between carriers and noncarriers at 3 years (11) or 5 years posttesting (19).”
BackgroundUyei, A. R., Peterson, S. K., Erlichman, J., Broglio, K. R., Yekell, S., Schmeler, K., Lu, K. H., Meric‐Bernstam, F., Amos, C. I., Strong, L. C., et al. (2006) · Cancer · doi:10.1002/cncr.22352 · Cited by 74
Fortuny, D., Balmañà, J., Graña, B., Torres, A., y Cajal, T. R., Darder, E., Gadea, N., Velasco, À., Lopez, C., Sanz, J., et al. (2008) · Human Reproduction · doi:10.1093/humrep/den471 · Cited by 71
“Finally, the diagnosis of a genetic susceptibility to breast and/or ovarian cancer may lead to an increase in anxiety and psychological disturbance (Van Oostrom et al., 2003).”
BackgroundLong-Term Effects of Breast Cancer Therapy and Care: Calm after the Storm?
Tommasi, C., Balsano, R., Corianò, M., Pellegrino, B., Saba, G., Bardanzellu, F., Denaro, N., Ramundo, M., Toma, I., Fusaro, A., et al. (2022) · Journal of Clinical Medicine · doi:10.3390/jcm11237239 · Cited by 76
Psychiatric implications of cancer genetic testing
Hirschberg, A., Chan–Smutko, G., & Pirl, W. F. (2014) · Cancer · doi:10.1002/cncr.28879 · Cited by 69
“Initial long-term studies for BRCA1/BRCA2 focused on individuals without cancer and reported no differences in psychosocial outcomes between carriers and noncarriers at 3 years(89) or 5 years after testing.(90) The 5year study included carriers, most of whom (91%) had undergone prophylactic surgery, which may have con…”
BackgroundResultInfluentialLooking different, feeling different: women’s reactions to risk-reducing breast and ovarian surgery
kConFab Psychosocial Group on behalf of the kConFab Investigators, Hallowell, N., Baylock, B., Heiniger, L., Butow, P. N., Patel, D., Meiser, B., Saunders, C., & Price, M. A. (2012) · Familial Cancer · doi:10.1007/s10689-011-9504-4 · Cited by 66
“that women who undergo RR surgery have a very positive emotional response to the reduction of their breast and/or ovarian cancer risk [26, 36] and often like the look of their reconstructed breasts following RRM [19–21].”
Backgroundvan Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker‐Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · Patient Education and Counseling · doi:10.1016/j.pec.2006.05.006 · Cited by 65
Self-citationLong-Term Reactions to Genetic Testing forBRCA1andBRCA2Mutations: Does Time Heal Women's Concerns?
Halbert, C. H., Stopfer, J. E., McDonald, J. A., Weathers, B., Collier, A., Troxel, A. B., & Domchek, S. M. (2011) · Journal of Clinical Oncology · doi:10.1200/jco.2010.33.1561 · Cited by 65
“Despite this, most studies have evaluated psychological reactions for only approximately 1 year after test results disclosure,(6) and to our knowledge, only one international study has evaluated psychological functioning among mutation carriers for longer periods of time.(7) To address this gap, we conducted an observ…”
BackgroundBody Image After Bilateral Prophylactic Mastectomy: An Integrative Literature Review
McGaughey, A. (2006) · Journal of Midwifery & Women s Health · doi:10.1016/j.jmwh.2006.07.002 · Cited by 64
Bresser, P. J. C., Seynaeve, C., Gool, A. R. V., Niermeijer, M. F., Duivenvoorden, H. J., van Dooren, S., van Geel, A. N., Menke‐Pluijmers, M. B. E., Klijn, J. G. M., & Tibben, A. (2006) · European Journal of Cancer · doi:10.1016/j.ejca.2006.09.009 · Cited by 63
Self-citationPredictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors
Graves, K. D., Peshkin, B. N., Halbert, C. H., DeMarco, T. A., Isaacs, C. J., & Schwartz, M. D. (2006) · Breast Cancer Research and Treatment · doi:10.1007/s10549-006-9423-5 · Cited by 61
“In our previous work, and consistent with the work of others, genetic test result [12,13] and cancer-specific worry or distress [14-16] predicted surgical decision making and risk prevention behaviors.”
ResultBilateral Prophylactic Mastectomy in Swedish Women at High Risk of Breast Cancer
Arver, B. W., Isaksson, K., Atterhem, H., Baan, A., Bergkvist, L., Brandberg, Y., Ehrencrona, H., Emanuelsson, M., Hellborg, H., Henriksson, K. M., et al. (2011) · Annals of Surgery · doi:10.1097/sla.0b013e318214b55a · Cited by 61
van Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker‐Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., Riedijk, S. R., et al. (2006) · Psycho-Oncology · doi:10.1002/pon.1062 · Cited by 59
“The genetic test results of other family members [2,3], support provided by the partner [4] and changed family relationships due to genetic testing [5] have been reported to affect psychological well-being.”
BackgroundMethodInfluentialSelf-citationPrevalence of sexual dysfunction after risk-reducing salpingo-oophorectomy
Tucker, P. E., Bulsara, M. K., Salfinger, S. G., Tan, J. J.-S., Green, H., & Cohen, P. A. (2015) · Gynecologic Oncology · doi:10.1016/j.ygyno.2015.11.002 · Cited by 60
Formal and Informal Support Needs of Young Women withBRCAMutations
Werner‐Lin, A. (2008) · Journal of Psychosocial Oncology · doi:10.1080/07347330802359776 · Cited by 57
“In fact, longitudinal evidence suggests distress fluctuates over a 5-year period as individuals struggle to integrate genetic testing information (van Oostrom et al., 2003).”
BackgroundMcAllister, M., Payne, K., Nicholls, S. G., MacLeod, R., Donnai, D., & Davies, L. M. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9046-3 · Cited by 56
“Van Oostrom et al. (2003) used the Openness to Discuss Cancer in the Family scale in a study investigating psychological impact of BRCA1/2 and showed that long-term distress was associated with poor communication about the test result within the family.”
BackgroundMethodRisk perception and cancer worries in families at increased risk of familial breast/ovarian cancer
Mellon, S., Gold, R. B., Janisse, J. J., Cichon, M., Tainsky, M. A., Simon, M. S., & Korczak, J. F. (2008) · Psycho-Oncology · doi:10.1002/pon.1370 · Cited by 56
“Other variables that may have applicability to cancer worries and risk perception could be included, such as cancer-specific distress or anxiety [11,18] and other concurrent stressors that families face that may influence risk perception and cancer worries [60].”
Wakefield, C. E., Meiser, B., Homewood, J., Peate, M., Kirk, J., Warner, B., Lobb, E. A., Gaff, C., & Tucker, K. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9068-x · Cited by 54
“Prophylactic mastectomy has well-established effects on physical and emotional symptoms, as does prophylactic salpingooophorectomy (Bebbington Hatcher et al., 2001; Fry et al., 2001; van Oostrom et al., 2003; Hallowell et al., 2004).”
BackgroundSheehan, J., & Sherman, K. A. (2011) · Patient Education and Counseling · doi:10.1016/j.pec.2011.11.006 · Cited by 53
“For example, amongst women at hereditary risk of breast cancer, the option of risk-reducing mastectomy can substantially reduce breast cancer risk [3], but this surgery is irreversible, has the potential for complications [4] and negative impacts on body image and psychological wellbeing [5–7], and”
BackgroundPrognostic Factors for Distress After Genetic Testing for Hereditary Cancer
Voorwinden, J. S., & Jaspers, J. (2015) · Journal of Genetic Counseling · doi:10.1007/s10897-015-9894-9 · Cited by 52
Evans, D. G., Binchy, A., Shenton, A., Hopwood, P., & Craufurd, D. (2009) · Clinical Genetics · doi:10.1111/j.1399-0004.2008.01146.x · Cited by 52
“Only two studies report to the 3 (20) or 5 (21) year point, and no study has yet assessed testing in the next generation.”
Backgroundvan Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker-Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · Annals of Oncology · doi:10.1093/annonc/mdl069 · Cited by 52
“It has been suggested that risk perception and distress levels are influenced by experiences with cancer in the family [9, 10].”
BackgroundSelf-citationA systematic review of men's experiences of their partner's mastectomy: coping with altered bodies
Rowland, E., & Metcalfe, A. (2014) · Psycho-Oncology · doi:10.1002/pon.3556 · Cited by 51
“Mastectomised women often suffer from low selfesteem as a result of their absent breast and altered body image [6,7,10,16].”
BackgroundPassive coping and psychological distress in women adhering to regular breast cancer surveillance
Pieterse, K., van Dooren, S., Seynaeve, C., Bartels, C. C. M., Rijnsburger, A. J., de Koning, H. J., Klijn, J. G. M., van Elderen, T., Tibben, A., & Duivenvoorden, H. J. (2007) · Psycho-Oncology · doi:10.1002/pon.1135 · Cited by 50
Self-citationWerner‐Lin, A., Hoskins, L. M., Doyle, M., & Greene, M. H. (2012) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/1363459312442420 · Cited by 51
“As a result, these young women may experience significant challenges in adjusting to their mutation status, leading to greater distress (Van Oostrom et al., 2003; Watson et al., 2004) than that experienced by older mutation-positive women.”
Backgroundvan Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker‐Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · European Journal of Cancer · doi:10.1016/j.ejca.2006.08.023 · Cited by 49
Self-citationCassidy, M. R., Roberts, J. S., Bird, T. D., Steinbart, E. J., Cupples, L. A., Chen, C. A., Linnenbringer, E. L., & Green, R. C. (2008) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2008.04.007 · Cited by 48
Anticipatory Loss and Early Mastectomy for Young Female BRCA1/2 Mutation Carriers
Hoskins, L. M., & Greene, M. H. (2012) · Qualitative Health Research · doi:10.1177/1049732312458182 · Cited by 47
“However, symptoms of depression and anxiety might increase in mutation-positive women over time (van Oostrom et al., 2003), and hypervigilance about minor physical symptoms that are thought to be related to a possible cancer diagnosis have been identified as burdensome by some carriers (Hoskins,…”
BackgroundJulian‐Reynier, C., Mancini, J., Mouret‐Fourme, E., Gauthier‐Villars, M., Bonadona, V., Berthet, P., Fricker, J., Caron, O., Luporsi, É., & Noguès, C. (2011) · European Journal of Human Genetics · doi:10.1038/ejhg.2010.241 · Cited by 47
Bosch, N., Parera, N., Gadea, N., Brunet, J., y Cajal, T. R., Torres, A., Graña, B., Velasco, À., Darder, E., Mensa, I., et al. (2012) · The Breast · doi:10.1016/j.breast.2012.02.004 · Cited by 45
Sie, A. S., van Zelst–Stams, W. A. G., Spruijt, L., Mensenkamp, A. R., Ligtenberg, M. J. L., Brunner, H. G., Prins, J. B., & Hoogerbrugge, N. (2013) · Familial Cancer · doi:10.1007/s10689-013-9686-z · Cited by 45
Living With Genetic Test Results for Hereditary Breast and Ovarian Cancer
Hamilton, R., Williams, J. K., Skirton, H., & Bowers, B. J. (2009) · Journal of Nursing Scholarship · doi:10.1111/j.1547-5069.2009.01279.x · Cited by 45
“For example, participants who chose to act by having a PM or PO remarked on the negative impact on their sexuality. van Oostrom et al. (2003), in a 5-year follow-up study, also reported increased problems with sexual functioning after prophylactic surgery in BRCA-positive women.”
BackgroundLiving with the BRCA genetic mutation: An uncertain conclusion to an unending process
DiMillo, J., Samson, A., Thériault, A., Lowry, S., Corsini, L., Verma, S., & Tomiak, E. M. (2012) · Psychology Health & Medicine · doi:10.1080/13548506.2012.687827 · Cited by 44
“For example, an increase in anxiety and depression (Lerman et al., 1995; van Oostrom et al., 2003), anger and distress (Croyle, Smith, Botkin, Baty, & Nash, 1997; Dorval et al., 2000), affected quality of life, an altered self-concept, vulnerability, stigma (Esplen et al., 2009), increases in…”
BackgroundMichelsen, T. M., Dørum, A., & Dahl, A. A. (2009) · Gynecologic Oncology · doi:10.1016/j.ygyno.2008.12.024 · Cited by 43
The impact of a false-positive MRI on the choice for mastectomy in BRCA mutation carriers is limited
Hoogerbrugge, N., Kamm, Y. J. L., Bult, P., Landsbergen, K. M., Bongers, E. M. H. F., Brunner, H. G., Bonenkamp, H. J., de Hullu, J. A., Ligtenberg, M. J., & Boetes, C. (2007) · Annals of Oncology · doi:10.1093/annonc/mdm537 · Cited by 43
“Both in our study and in previous studies, it was found that especially women with a mother with breast cancer have a first preference for prophylactic mastectomy [11].”
ResultVos, J., Oosterwijk, J., Gómez-García, E. B., Menko, F. H., Jansen, A., Stoel, R. D., van Asperen, C. J., Tibben, A., & Stiggelbout, A. M. (2010) · Clinical Genetics · doi:10.1111/j.1399-0004.2010.01581.x · Cited by 42
Self-citationden Heijer, M., Seynaeve, C., Vanheusden, K., Duivenvoorden, H. J., Bartels, C. C. M., Menke‐Pluymers, M. B. E., & Tibben, A. (2010) · Psycho-Oncology · doi:10.1002/pon.1850 · Cited by 42
“Family communication about hereditary cancer The Openness to Discuss Cancer in the Family Scale [18] adapted to hereditary cancer [14] was used to measure openness of communication about hereditary cancer.”
BackgroundMethodResultSelf-citationMacDonald, D. J., Sarna, L. P., Weitzel, J. N., & FERRELL, B. R. (2009) · Journal of Genetic Counseling · doi:10.1007/s10897-009-9267-3 · Cited by 41
Glassey, R., Ives, A. D., Saunders, C. M., & Musiello, T. (2016) · The Breast · doi:10.1016/j.breast.2016.05.012 · Cited by 41
“However, qualitative studies have found the situation is more complex and many women are not satisfied or happy with the physical changes caused by surgery [23,28,45].”
BackgroundCost-Effectiveness of Testing for Breast Cancer Susceptibility Genes
Holland, M. L., Huston, A. J., & Noyes, K. (2008) · Value in Health · doi:10.1111/j.1524-4733.2008.00418.x · Cited by 41
Schlich‐Bakker, K. J., Ausems, M. G. E. M., Schipper, M., ten Kroode, H. F. J., Wárlám-Rodenhuis, C. C., & van den Bout, J. (2007) · Breast Cancer Research and Treatment · doi:10.1007/s10549-007-9680-y · Cited by 40
Kinney, A. Y., Bloor, L. E., Mandal, D. M., Simonsen, S. E., Baty, B. J., Holubkov, R., Seggar, K., Neuhausen, S. L., & Smith, K. R. (2005) · Cancer · doi:10.1002/cncr.21479 · Cited by 40
Patenaude, A. F., Orozco, S., Li, X., Kaelin, C. M., Gadd, M., Matory, Y., Mayzel, K., Roche, C. A., Smith, B. L., Farkas, W., et al. (2008) · Psycho-Oncology · doi:10.1002/pon.1279 · Cited by 38
Receiving inconclusive genetic test results: An interpretive description of the BRCA1/2 experience
Maheu, C., & Thorne, S. E. (2008) · Research in Nursing & Health · doi:10.1002/nur.20286 · Cited by 38
“Although researchers have described the experiences of those who received positive results (Bish et al., 2002a; Lim et al., 2004; van Oostrom et al., 2003, 2007), considerably less is known about the experiences of those who receive inconclusive test results (Dorval et al., 2005).”
BackgroundExperiences of Women Who Underwent Predictive BRCA 1/2 Mutation Testing Before the Age of 30
Brunstrom, K., Murray, A., & McAllister, M. (2015) · Journal of Genetic Counseling · doi:10.1007/s10897-015-9845-5 · Cited by 41
Lieberman, S., Tomer, A., Ben-Chetrit, A., Olsha, O., Strano, S., Beeri, R., Koka, S., Fridman, H., Djemal, K., Glick, I., et al. (2019) · Genetics in Medicine · doi:10.1038/s41436-019-0734-4 · Cited by 38
Psychosocial and Behavioral Impact of Genetic Counseling and Testing
Vadaparampil, S. T., Miree, C. A., Wilson, C., & Jacobsen, P. B. (2007) · Breast Disease · doi:10.3233/bd-2007-27106 · Cited by 37
“Data presented by two studies conducted in the Netherlands suggest that regardless of the test result, there may be increases in levels of distress over time associated with psychological distress, as well as personal and family history characteristics [91,92].”
Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk
Young, A. L., Butow, P. N., Rhodes, P., Tucker, K., Williams, R., Healey, E., & Wakefield, C. E. (2019) · Journal of Genetic Counseling · doi:10.1002/jgc4.1055 · Cited by 37
Howard, A. F., Bottorff, J. L., Balneaves, L. G., & Kim‐Sing, C. (2010) · BMC Women s Health · doi:10.1186/1472-6874-10-24 · Cited by 36
“Although these psychological symptoms decline over time for the majority of mutation carriers [19-22], significant psychological distress can persist for others [22,23].”
BackgroundVos, J., Oosterwijk, J. C., Gómez-García, E. B., Menko, F. H., Collee, M. J., van Asperen, C. J., Jansen, A. M., Stiggelbout, A. M., & Tibben, A. (2011) · Patient Education and Counseling · doi:10.1016/j.pec.2011.04.017 · Cited by 36
“The counselees’ medical history of cancer [3,10,11,35,36] and several sociodemographic characteristics – e.”
BackgroundSelf-citationMeasuring Quality of Life in Cancer Survivors
Victorson, D. E., Cella, D. F., Wagner, L. I., Kramer, L. M. B., & Smith, M. L. (2007) · Springer eBooks · doi:10.1007/978-0-387-34562-8_6 · Cited by 36
Underhill-Blazey, M. L., Lally, R. M., Kiviniemi, M. T., Murekeyisoni, C., & Dickerson, S. S. (2012) · Cancer Nursing · doi:10.1097/ncc.0b013e31824530fa · Cited by 34
Psychological impact of recall on women with BRCA mutations undergoing MRI surveillance
Spiegel, T. N., Esplen, M. J., Hill, K. A., Wong, J., Causer, P. A., & Warner, E. (2011) · The Breast · doi:10.1016/j.breast.2011.04.004 · Cited by 34
International Perspectives on Genetic Counseling and Testing for Breast Cancer Risk
Meiser, B., Gaff, C., Julian‐Reynier, C., Biesecker, B. B., Esplen, M. J., Vodermaier, A., & Tibben, A. (2007) · Breast Disease · doi:10.3233/bd-2007-27107 · Cited by 33
Self-citationBRCA1/2 genetic testing uptake and psychosocial outcomes in men
Graves, K. D., Gatammah, R., Peshkin, B. N., Krieger, A., Gell, C., Valdimarsdottir, H. B., & Schwartz, M. D. (2011) · Familial Cancer · doi:10.1007/s10689-011-9425-2 · Cited by 33
Subjective versus objective risk in genetic counseling for hereditary breast and/or ovarian cancers
Caruso, A., Vigna, C., Marozzo, B., Sega, F. M., Sperduti, I., Cognetti, F., & Savarese, A. (2009) · Journal of Experimental & Clinical Cancer Research · doi:10.1186/1756-9966-28-157 · Cited by 33
“Subjective risk assessment has also a great importance because it influences decisions on whether to undergo genetic testing or not [1-3], on whether to participate in surveillance programmes [4,5], or to accept prophylactic surgery [ 6-8 ].”
BackgroundResultInfluentialReichelt, J. G., Møller, P., Heimdal, K., & Dahl, A. A. (2008) · Familial Cancer · doi:10.1007/s10689-008-9182-z · Cited by 36
“Our findings of similar or reduced distress levels at 18 month compared to pre-test are in conflict to the 60 month follow-up results of van Oostrom et al. [ 16 ] who reported increased distress levels in spite of prophylactic surgery in most carriers of their sample.”
BackgroundResultInfluentialHereditary breast cancer: from bench to bedside
Grève, J. D., Sermijn, E., Brakeleer, S. D., Ren, Z., & Teugels, E. (2008) · Current Opinion in Oncology · doi:10.1097/cco.0b013e3283139173 · Cited by 32
d’Agincourt-Canning, L. (2006) · Clinical Genetics · doi:10.1111/j.1399-0004.2006.00720.x · Cited by 32
Adams, S., Greeder, L., Reich, E. W., Shao, Y., Fosina, D., Hanson, N. C., Tassello, J., Singh, B., Spagnoli, G. C., Demaria, S., et al. (2011) · Cancer Immunology Immunotherapy · doi:10.1007/s00262-011-1005-7 · Cited by 32
Vodermaier, A., Esplen, M. J., & Maheu, C. (2010) · Familial Cancer · doi:10.1007/s10689-010-9325-x · Cited by 32
“Study findings are mixed as to whether long-term distress ([ one year) increases [2], remains stable [3], or decreases across time [4].”
BackgroundIn Their Own Words: Treating Very Young BRCA1/2 Mutation-Positive Women with Care and Caution
Hoskins, L. M., Werner‐Lin, A., & Greene, M. H. (2014) · PLoS ONE · doi:10.1371/journal.pone.0087696 · Cited by 29
Cancer Risk Management Decision Making for BRCA+ Women
Jabaley, T., & Mawn, B. E. (2014) · Western Journal of Nursing Research · doi:10.1177/0193945913519870 · Cited by 29
Aktan–Collan, K., Kääriäinen, H., Järvinen, H., Peltomäki, P., Pylvänäinen, K., Mecklin, J., & Haukkala, A. (2013) · Familial Cancer · doi:10.1007/s10689-013-9628-9 · Cited by 29
“In a previous follow-up study of the emotional impact of BRCA genetic testing, subjects having doubts on the validity of the personal test result had higher levels of cancer worry and hereditary cancer distress [32].”
BackgroundHow medical choices influence quality of life of women carrying a BRCA mutation
Harmsen, M. G., Hermens, R., Prins, J. B., Hoogerbrugge, N., & de Hullu, J. A. (2015) · Critical Reviews in Oncology/Hematology · doi:10.1016/j.critrevonc.2015.07.010 · Cited by 28
“van Oostrom et al. (2003)”
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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