Literature DB >> 19902342

Women's perceptions of the personal and family impact of genetic cancer risk assessment: focus group findings.

Deborah J MacDonald1, Linda Sarna, Jeffrey N Weitzel, Betty Ferrell.   

Abstract

Women with a personal or family history of breast or ovarian cancer are increasingly presenting for genetic cancer risk assessment (GCRA). To explore the personal and family impact of GCRA, four focus groups were conducted of women seen for risk assessment. Participants were 22 primarily non-Latina White women with a personal or family history of breast or ovarian cancer. Analysis of the data identified new themes related to balancing time to assimilate risk information with the need to make timely healthcare decisions, physicians' lack of sufficient genetic knowledge, and concern for daughters regardless of the daughters' age. Other themes related to protecting others, knowledge as empowerment, reassessing personal attribution of cancer risk, managing uncertainty, reappraising body image, and experiencing divergent family responses to communication of cancer risk and healthcare decisions. Understanding the personal and family impact of GCRA may enable genetics professionals to tailor their counseling efforts to better meet the needs of these women. Additional research is needed to extend these findings and identify interventions to support positive outcomes of GCRA.

Entities:  

Mesh:

Year:  2009        PMID: 19902342     DOI: 10.1007/s10897-009-9267-3

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  62 in total

1.  Satisfaction after contralateral prophylactic mastectomy: the significance of mastectomy type, reconstructive complications, and body appearance.

Authors:  Marlene H Frost; Jeffrey M Slezak; Nho V Tran; Constance I Williams; Joanne L Johnson; John E Woods; Paul M Petty; John H Donohue; Clive S Grant; Jeff A Sloan; Thomas A Sellers; Lynn C Hartmann
Journal:  J Clin Oncol       Date:  2005-10-03       Impact factor: 44.544

2.  Participation in breast cancer susceptibility testing protocols: influence of recruitment source, altruism, and family involvement on women's decisions.

Authors:  G Geller; T Doksum; B A Bernhardt; S A Metz
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  1999-04       Impact factor: 4.254

3.  Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium.

Authors:  D Ford; D F Easton; M Stratton; S Narod; D Goldgar; P Devilee; D T Bishop; B Weber; G Lenoir; J Chang-Claude; H Sobol; M D Teare; J Struewing; A Arason; S Scherneck; J Peto; T R Rebbeck; P Tonin; S Neuhausen; R Barkardottir; J Eyfjord; H Lynch; B A Ponder; S A Gayther; M Zelada-Hedman
Journal:  Am J Hum Genet       Date:  1998-03       Impact factor: 11.025

4.  Appropriateness of breast-conserving treatment of breast carcinoma in women with germline mutations in BRCA1 or BRCA2: a clinic-based series.

Authors:  Mark Robson; Tiffany Svahn; Beryl McCormick; Patrick Borgen; Clifford A Hudis; Larry Norton; Kenneth Offit
Journal:  Cancer       Date:  2005-01-01       Impact factor: 6.860

5.  Associations between relationship support and psychological reactions of participants and partners to BRCA1 and BRCA2 testing in a clinic-based sample.

Authors:  Sharon Manne; Janet Audrain; Marc Schwartz; David Main; Clinton Finch; Caryn Lerman
Journal:  Ann Behav Med       Date:  2004-12

6.  Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study.

Authors:  Iris van Oostrom; Hanne Meijers-Heijboer; Litanja N Lodder; Hugo J Duivenvoorden; Arthur R van Gool; Caroline Seynaeve; Conny A van der Meer; Jan G M Klijn; Bert N van Geel; Curt W Burger; Juriy W Wladimiroff; Aad Tibben
Journal:  J Clin Oncol       Date:  2003-10-15       Impact factor: 44.544

7.  American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.

Authors: 
Journal:  J Clin Oncol       Date:  2003-04-11       Impact factor: 44.544

8.  Breast and ovarian cancer incidence in BRCA1-mutation carriers. Breast Cancer Linkage Consortium.

Authors:  D F Easton; D Ford; D T Bishop
Journal:  Am J Hum Genet       Date:  1995-01       Impact factor: 11.025

9.  The impact of genetic counselling about breast cancer risk on women's risk perceptions and levels of distress.

Authors:  A Cull; E D Anderson; S Campbell; J Mackay; E Smyth; M Steel
Journal:  Br J Cancer       Date:  1999-02       Impact factor: 7.640

10.  A randomised controlled trial of breast cancer genetics services in South East Scotland: psychological impact.

Authors:  A Fry; A Cull; S Appleton; R Rush; S Holloway; D Gorman; R Cetnarskyj; R Thomas; J Campbell; E Anderson; M Steel; M Porteous; H Campbell
Journal:  Br J Cancer       Date:  2003-08-18       Impact factor: 7.640

View more
  20 in total

1.  Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

Authors:  Susan M Wolf; Rebecca Branum; Barbara A Koenig; Gloria M Petersen; Susan A Berry; Laura M Beskow; Mary B Daly; Conrad V Fernandez; Robert C Green; Bonnie S LeRoy; Noralane M Lindor; P Pearl O'Rourke; Carmen Radecki Breitkopf; Mark A Rothstein; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

Review 2.  Specific psychosocial issues of individuals undergoing genetic counseling for cancer - a literature review.

Authors:  Willem Eijzenga; Daniela E E Hahn; Neil K Aaronson; Irma Kluijt; Eveline M A Bleiker
Journal:  J Genet Couns       Date:  2013-08-31       Impact factor: 2.537

3.  Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs.

Authors:  Carin R Espenschied; Deborah J MacDonald; Julie O Culver; Sharon Sand; Karen Hurley; Kimberly C Banks; Jeffrey N Weitzel; Kathleen R Blazer
Journal:  J Cancer Educ       Date:  2012-06       Impact factor: 2.037

4.  Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.

Authors:  Ashley Pantaleao; Jennifer L Young; Norman B Epstein; Mae Carlson; Renée C Bremer; Payal P Khincha; June A Peters; Mark H Greene; Kevin Roy; Maria Isabel Achatz; Sharon A Savage; Allison Werner-Lin
Journal:  Fam Process       Date:  2019-10-24

Review 5.  Genetics, genomics, and cancer risk assessment: State of the Art and Future Directions in the Era of Personalized Medicine.

Authors:  Jeffrey N Weitzel; Kathleen R Blazer; Deborah J MacDonald; Julie O Culver; Kenneth Offit
Journal:  CA Cancer J Clin       Date:  2011-08-19       Impact factor: 508.702

6.  Living my family's story: identifying the lived experience in healthy women at risk for hereditary breast cancer.

Authors:  Meghan L Underhill; Robin M Lally; Marc T Kiviniemi; Christine Murekeyisoni; Suzanne S Dickerson
Journal:  Cancer Nurs       Date:  2012 Nov-Dec       Impact factor: 2.592

7.  Talking to children about maternal BRCA1/2 genetic test results: a qualitative study of parental perceptions and advice.

Authors:  Andrea Farkas Patenaude; Tiffani A DeMarco; Beth N Peshkin; Heiddis Valdimarsdottir; Judy E Garber; Katherine A Schneider; Larissa Hewitt; Jennifer Hamilton; Kenneth P Tercyak
Journal:  J Genet Couns       Date:  2012-10-24       Impact factor: 2.537

8.  Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study.

Authors:  Marion Myklebust; Eva Gjengedal; Nina Strømsvik
Journal:  J Genet Couns       Date:  2016-04-19       Impact factor: 2.537

Review 9.  Confidentiality & the Risk of Genetic Discrimination: What Surgeons Need to Know.

Authors:  Amanda Gammon; Deborah W Neklason
Journal:  Surg Oncol Clin N Am       Date:  2015-07-16       Impact factor: 3.495

10.  How does genetic testing influence anxiety, depression, and quality of life? A hereditary breast and ovarian cancer syndrome suspects trial.

Authors:  Francisca Fernanda Barbosa Oliveira; Paulo Goberlânio de Barros Silva; Rosane Oliveira de Sant'Ana; Clarissa Gondim Picanço de Albuquerque; Maria Júlia Barbosa Bezerra; Deysi Viviana Tenazoa Wong; Flávio da Silveira Bitencourt; Isabelle Joyce de Lima Silva-Fernandes; Marcos Venicio Alves Lima
Journal:  Support Care Cancer       Date:  2020-11-05       Impact factor: 3.603

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.