Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study

Oostrom, Iris van; Meijers-Heijboer, Hanne; Duivenvoorden, Hugo J.; Bröcker‐Vriends, A. H. J. T.; Asperen, Christi J. van; Sijmons, Rolf H.; Seynaeve, C.; Gool, Arthur R. Van; Klijn, Jan G.M.; Tibben, Aad

doi:10.1111/j.1399-0004.2007.00731.x

Cited by 66 publications

(75 citation statements)

References 39 publications

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“…129 Finally, providing partner support and facilitating family communication regarding hereditary cancer has been recommended, because studies have demonstrated that family members may also experience distress throughout the genetic testing process. [130][131][132] Mutation carriers are faced with difficult decisions about risk-reducing prophylactic surgeries. Providing support for these decisions may facilitate the process and decrease distress.…”

Section: Discussionmentioning

confidence: 99%

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: Discussionmentioning

confidence: 99%

Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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“…Positive implications were more often described by carriers than non-carriers, which may reflect adaptation and coping [12,30]. A minority of the families reported a negative impact, including isolation and guilt [26].…”

Section: Discussionmentioning

confidence: 99%

“…In contrast, suboptimal communication, poor family relations and decisions to restrict disclosure of information may hamper information spread [9,11]. Family structure and function may not only influence how family members receive information, but also how knowledge about an increased risk is handled, decisions related to genetic testing and participation in surveillance [8,10,12]. With the aim to explore family perspectives, we interviewed 27 members of Lynch syndrome families with focus on how family members perceived that knowledge about hereditary cancer has affected the family.…”

Section: Introductionmentioning

confidence: 99%

Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations

Bartuma

Nilbert

Carlsson

2012

Hered Cancer Clin Pract

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BackgroundA growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer.MethodsLynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles.ResultsFamily members described how learning about Lynch syndrome shifted focus from daily issues to concerns about cancer. Changes in communication related to difficulties in talking to children about heredity and informing new family members and distant relatives about an increased risk of cancer. Influence on relations was exemplified by family members taking on different roles, e.g. females often being responsible for coordinating information about heredity and providing support. Families in which members had experienced cancer at young age typically informed children soon after learning about heredity and at young age, whereas families with experience of cancer at higher age postponed information and thereby also genetic counselling.ConclusionsThree major family perspectives are described in Lynch syndrome families; becoming a risk family, patterns of communication and influence on family relations. Since these issues are central, our findings suggests that such family perspectives should be considered during genetic counselling in order to contribute to information spread, help family members cope with the increased risk, and motivate family members at risk to undergo surveillance.

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“…In many medical contexts, high monitors have been found to fare better when provided with detailed, but reassuring, information about their situation [65][66][67][68][69][70][71][72][73][74][75]. The information presented to them should be ample and accurate but framed less negatively, in a manner that distances or cools it, so their sense of vulnerability and distress does not panic them [37].…”

Section: Discussionmentioning

confidence: 99%