Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support

Young women from hereditary breast and ovarian cancer (HBOC) families face a series of medical decisions regarding their cancer risk management and integrating this information into their life planning. This presents unique medical and psychosocial challenges that exist without comprehensive intervention. To help lay the groundwork for intervention, we conducted a qualitative study among young women from HBOC families (N = 12; Mean age = 22) and cancer genetic counselors (N = 12) to explicate domains most critical to caring for this population. Women and counselors were interviewed by telephone. The predominant interview themes included preventative care planning and risk management, decision making around the pros and cons of cancer risk assessment, medical management, and psychosocial stresses experienced. Young women endorsed psychosocial stress significantly more frequently than did counselors. Both groups noted the short- and long-term decision making challenges and the support and conflict engendered among familial relationships. Our results suggest young women value the support they receive from their families and their genetic counselors, but additional, external supports are needed to facilitate adaptation to HBOC risk. In feedback interviews focused on intervention planning with a subset of these young women (N = 9), they endorsed the predominant interview themes discovered as important intervention content, a structure that would balance discussion of medical information and psychosocial skill-building that could be tailored to the young women’s needs, and delivery by trained peers familiar with HBOC risk.

[1]  R. Tamimi,et al.  BRCA1 and BRCA2 Mutation Testing in Young Women With Breast Cancer. , 2016, JAMA oncology.

[2]  S. Zipfel,et al.  Psychological Distress, Anxiety, and Depression of Cancer-Affected BRCA1/2 Mutation Carriers: a Systematic Review , 2016, Journal of Genetic Counseling.

[3]  L. Gallagher,et al.  It’s Time for the Genetic Counseling Profession to Embrace Social Media , 2016, Journal of Genetic Counseling.

[4]  L. Hartmann,et al.  The Role of Risk-Reducing Surgery in Hereditary Breast and Ovarian Cancer. , 2016, The New England journal of medicine.

[5]  Claudia X. Aguado Loi,et al.  Utilization and Outcomes of BRCA Genetic Testing and Counseling in a National Commercially Insured Population: The ABOUT Study. , 2015, JAMA oncology.

[6]  J. Duffy,et al.  Implementing a telephone based peer support intervention for women with a BRCA1/2 mutation , 2015, Familial Cancer.

[7]  A. Werner-Lin,et al.  A Survey of Genetic Counselors About the Needs of 18–25 Year Olds from Families with Hereditary Breast and Ovarian Cancer Syndrome , 2015, Journal of Genetic Counseling.

[8]  J. Duffy,et al.  Randomized controlled trial of a telephone-based peer-support program for women carrying a BRCA1 or BRCA2 mutation: impact on psychological distress. , 2014, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[9]  Meghan L. Underhill,et al.  Seeking Balance: Decision Support Needs of Women Without Cancer and a Deleterious BRCA1 or BRCA2 Mutation , 2014, Journal of Genetic Counseling.

[10]  P. Butow,et al.  Distress in unaffected individuals who decline, delay or remain ineligible for genetic testing for hereditary diseases: a systematic review , 2013, Psycho-oncology.

[11]  A. Patenaude,et al.  Young adult daughters of BRCA1/2 positive mothers: What do they know about hereditary cancer and how much do they worry? , 2013, Psycho-oncology.

[12]  K. Offit,et al.  Gene patents and personalized cancer care: impact of the Myriad case on clinical oncology. , 2013, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[13]  A. Patenaude,et al.  Decisional Outcomes of Maternal Disclosure of BRCA1/2 Genetic Test Results to Children , 2013, Cancer Epidemiology, Biomarkers & Prevention.

[14]  A. Werner-Lin,et al.  A Multi-Case Report of the Pathways To and Through Genetic Testing and Cancer Risk Management for BRCA Mutation-Positive Women Aged 18–25 , 2013, Journal of Genetic Counseling.

[15]  K. Ashing-Giwa,et al.  Peer-based models of supportive care: the impact of peer support groups in African American breast cancer survivors. , 2012, Oncology nursing forum.

[16]  B. Egleston,et al.  Knowledge and perceptions of familial and genetic risks for breast cancer risk in adolescent girls , 2012, Breast Cancer Research and Treatment.

[17]  C. Dupraz,et al.  What perceptions do patients have of decision making (DM)? Toward an integrative patient-centered care model. A qualitative study using focus-group interviews. , 2012, Patient education and counseling.

[18]  W. Pratt,et al.  Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians , 2011, Journal of medical Internet research.

[19]  S. Mahon Impact of the genetic screening revolution: understanding and meeting the needs of previvors with a known family mutation in BRCA/BRCA2 , 2011, Evidence Based Nursing.

[20]  H. Valdimarsdottir,et al.  Longitudinal Changes in Patient Distress following Interactive Decision Aid Use among BRCA1/2 Carriers , 2011, Medical decision making : an international journal of the Society for Medical Decision Making.

[21]  S. Dickerson,et al.  Women receiving news of a family BRCA1/2 mutation: messages of fear and empowerment. , 2010, Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing.

[22]  R. Hamilton,et al.  Conditions and consequences of a BRCA mutation in young, single women of childbearing age. , 2010, Oncology nursing forum.

[23]  D. Cella,et al.  Randomized Controlled Trial of a Psychosocial Telephone Counseling Intervention in BRCA1 and BRCA2 Mutation Carriers , 2010, Cancer Epidemiology, Biomarkers & Prevention.

[24]  Rachel E. Goldsmith,et al.  Distress among women receiving uninformative BRCA1/2 results: 12‐month outcomes , 2009, Psycho-oncology.

[25]  Rachel E. Goldsmith,et al.  Cognitive and emotional factors predicting decisional conflict among high-risk breast cancer survivors who receive uninformative BRCA1/2 results. , 2009, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[26]  O. Olopade,et al.  Learning of your parent's BRCA mutation during adolescence or early adulthood: a study of offspring experiences , 2009, Psycho-oncology.

[27]  H A Risch,et al.  The BOADICEA model of genetic susceptibility to breast and ovarian cancers: updates and extensions , 2008, British Journal of Cancer.

[28]  B. Rosen,et al.  Development and testing of a decision aid for breast cancer prevention for women with a BRCA1 or BRCA2 mutation , 2007, Clinical genetics.

[29]  R. Hamilton,et al.  The Theory of Genetic Vulnerability: A Roy Model Exemplar , 2007, Nursing science quarterly.

[30]  Giovanni Parmigiani,et al.  Meta-analysis of BRCA1 and BRCA2 penetrance. , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[31]  W. Daal,et al.  Randomized trial of a shared decision-making intervention consisting of trade-offs and individualized treatment information for BRCA1/2 mutation carriers. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[32]  J. Hopper,et al.  Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: a combined analysis of 22 studies. , 2003, American journal of human genetics.

[33]  S. Giordano,et al.  Rates of BRCA1/2 mutation testing among young survivors of breast cancer , 2015, Breast Cancer Research and Treatment.

[34]  Hodgkin Lymphoma NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines , 2014 .

[35]  D. Brizel,et al.  National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology , 2012 .

[36]  Suzanne O'Neill,et al.  Randomized trial of a decision aid for BRCA1/BRCA2 mutation carriers: impact on measures of decision making and satisfaction. , 2009, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[37]  A. Baum,et al.  Stress and genetic testing for disease risk. , 1997, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.