Young Women's Perspectives on Being Screened for Hereditary Breast and Ovarian Cancer Risk During Routine Primary Care

• Published in: Women's health issues Vol. 34; no. 3; pp. 268 - 275
• Main Authors: Head, Mady, Cohn, Betty, Wernli, Karen J., Palazzo, Lorella, Ehrlich, Kelly, Matson, Abigail, Knerr, Sarah
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.05.2024
• Subjects: Adult; Breast Neoplasms - diagnosis; Breast Neoplasms - genetics; Breast Neoplasms - prevention & control; Early Detection of Cancer; Female; Focus Groups; Genetic Counseling; Genetic Predisposition to Disease; Genetic Testing; Health Knowledge, Attitudes, Practice; Hereditary Breast and Ovarian Cancer Syndrome - diagnosis; Hereditary Breast and Ovarian Cancer Syndrome - genetics; Humans; Mass Screening; Ovarian Neoplasms - diagnosis; Ovarian Neoplasms - genetics; Ovarian Neoplasms - prevention & control; Primary Health Care; Qualitative Research; Risk Assessment; Young Adult
• ISSN: 1049-3867; 1878-4321
• DOI: 10.1016/j.whi.2024.01.004

The U.S. Preventive Services Task Force recommends screening women to identify individuals eligible for genetic counseling based on a priori hereditary breast and ovarian cancer syndrome (HBOC) risk (i.e., risk assessment). However, risk assessment has not been widely integrated into primary care. This qualitative study explored young women's views on implementing routine HBOC risk assessment with a focus on equity and patient-centeredness. We conducted group discussions with young women (aged 21–40 years) receiving care in an integrated health care system. Discussion groups occurred in two phases and used a modified deliberative approach that included a didactic component and prioritized developing consensus. Twenty women participated in one of three initial small group discussions (phase one). All 20 were invited to participate in a subsequent large group discussion (phase two), and 15 of them attended. Key themes and recommendations were as follows. Risk assessment should be accessible, contextualized, and destigmatized to encourage participation and reduce anxiety, particularly for women who do not know their family history. Providers conducting risk assessments must be equipped to address women's informational needs, relieve emotionality, and plan next steps after positive screens. Finally, to minimize differential screening uptake, health care systems must prioritize equity in program design and contribute to external educational and outreach efforts. Young women see pragmatic opportunities for health systems to optimize HBOC screening implementation.