title: 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.
abstract: 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.
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA. cne8@georgetown.edu.
authors.forename: Chalanda
authors.initials: C
authors.lastname: Evans
authors.affiliation: College of Nursing, Armour Academic Center, Rush University, 600 S. Paulina Street, Suite 1080, Chicago, IL 60612, USA. rebekah_hamilton@rush.edu.
authors.forename: Rebekah J
authors.initials: RJ
authors.lastname: Hamilton
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA. tercyakk@georgetown.edu.
authors.forename: Kenneth P
authors.initials: KP
authors.lastname: Tercyak
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA. peshkinb@georgetown.edu.
authors.forename: Beth N
authors.initials: BN
authors.lastname: Peshkin
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA. kanto.rabema@gmail.com.
authors.forename: Kantoniony
authors.initials: K
authors.lastname: Rabemananjara
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University, 3800 Reservoir Road, NW, Washington, DC 20007, USA. isaacsc@georgetown.edu.
authors.forename: Claudine
authors.initials: C
authors.lastname: Isaacs
authors.affiliation: Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA. sco4@georgetown.edu.
authors.forename: Suzanne C
authors.initials: SC
authors.lastname: O'Neill
keywords: BRCA1/2; family support; genetic counseling; intervention development; peer support