A multicenter study of supportive‐expressive group therapy for women with BRCA1/BRCA2 mutations

Esplen, Mary Jane; Hunter, Jennifer J.; Leszcz, Molyn; Narod, Steven A.; Metcalfe, Kelly; Glendon, Gord; Butler, Kate; Liede, Alexander; Young, Mary; Kieffer, Stephanie; DiProspero, Lisa; Irwin, Ellen; Wong, Jiahui

doi:10.1002/cncr.20661

Cited by 61 publications

(66 citation statements)

References 46 publications

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“…128 Groups represent another option, and it has been demonstrated that supportive-expressive therapy groups can relieve feelings of isolation and improve psychosocial functioning, cancer worries, and depression in individuals with BRCA1/ BRCA2 mutations. 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.…”

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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“…However, as the new genetics has reconfigured the family unit as the patient when inherited conditions are diagnosed, our intervention included both the patient and other non-ill family members, differently from the majority of known psychoeducational interventions (Esplen et al 2004;Karp et al 1999;Kash et al 1995;Speice et al 2002;Wellisch et al 1999). Although support groups for families and caregivers are common, groups joining patients and their relatives remain unusual.…”

Section: Discussionmentioning

confidence: 99%

“…However, by contemplating just one single 'moment', this model may result as a scarce effort for embracing the ongoing psychosocial demands of those facing oncogenetic risk and their families. In order to potentiate a broader impact, follow-up 'booster' sessions after an intensive 1-day workshop experience have been argued by Steinglass et al (2011) and already used by Esplen et al (2004).…”

Section: Learning From Our Experiencementioning

confidence: 99%

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Are family-oriented interventions in Portuguese genetics services a remote possibility? Professionals’ views on a multifamily intervention for cancer susceptibility families

2012

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This article examines genetics healthcare professionals' opinions about a multifamily psychoeducational programme for hereditary cancer susceptibility families, implemented at a Portuguese genetics service. Their views on how a family-oriented approach is envisioned to be incorporated in Portuguese genetic counselling services are also reported. Six focus groups and three individual interviews were undertaken comprising 30 professionals working in the provision of genetic counselling and genetic counsellor trainees. Participants were given a page-summary describing the intervention and asked to comment the strengths and limitations of the multifamily intervention. All interviews were fully transcribed and analysed using the constant comparison method. The qualitative analysis generated data comprising four thematic categories in relation to the professionals' views: (a) usefulness of the programme; (b) programme's methodological and practical obstacles; (c) genetics services constraints; and (d) suggestions for improving the programme and further family-oriented interventions. We reflect on the reported views examining the intervention, and on how current constraints of genetic services limit the provision of psychosocial support for cancer susceptibility families. The implications of these findings regarding the purpose of genetic counselling are discussed. Results may sensitise stakeholders and policy makers for the need to deliver family-based services in cancer genetic counselling, with adequate planning and collaborative involvement of different professionals.

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“…Upon learning of their positive test result, the BRCA1/2 carrier is faced with several challenges, such as being at increased risk to develop cancer as well as assuming the responsibility to disseminate this information to biological kin [10,11]. Disclosure of HBOC risk information to relatives has been described as one of the most complex areas for carriers because they are faced with deciding if, when and how to tell relatives (including children) about their genetic status [8,12,13].…”

Section: Introductionmentioning

confidence: 99%

The phases of disclosing BRCA1/2 genetic information to offspring

2008

Self Cite

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Objective: Women who carry a genetic mutation for hereditary breast/ovarian cancer (BRCA1 or BRCA2) are at high risk to develop cancer. A positive genetic test result also has implications for a BRCA1/2 carrier's offspring who each have a 50% chance of inheriting the mutation. The dissemination of BRCA1/2-related information by carriers to offspring is not well understood. Our study examines the experiences of BRCA1/2 carriers in communicating genetic information to their offspring using a grounded theory approach.Methods: Qualitative data were obtained from a multi-site group therapy trial for BRCA1/2 carriers with primary themes identified and coded using the constant comparison technique and verified by team members.Results: Female participants had a mean age of 45.4 years, 83% were married, 71% had children (ranging from ages 2 to 30 years) and 45.9% had a prior diagnosis of cancer. Dissemination of genetic information by BRCA1/2 carriers to their offspring was described as a process involving several distinct phases with specific challenges within each phase. Several themes were identified including dilemmas on 'if' and 'when' to disclose to offspring, concerns should offspring receive a positive test result for BRCA1/2, dilemmas around feeling a need to protect versus the need to inform, and women as being the primary communicators.Conclusion: These findings have implications for genetic counselling as well as follow-up.

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A multicenter study of supportive‐expressive group therapy for women with BRCA1/BRCA2 mutations

Cited by 61 publications

References 46 publications

Psychiatric implications of cancer genetic testing

Psychiatric implications of cancer genetic testing

Are family-oriented interventions in Portuguese genetics services a remote possibility? Professionals’ views on a multifamily intervention for cancer susceptibility families

The phases of disclosing BRCA1/2 genetic information to offspring

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