WASHINGTON – An online decision aid can help premenopausal women with breast cancer make informed decisions about their treatment, investigators report.
“Web-based decision aids can be an important complement to clinical care, to help women and their families think about some of these very difficult decisions in a very short space of time,” said Dr. Claire Foster, a chartered health psychologist in the faculty of health sciences at the University of Southampton (England).
Decision aids can enhance understanding, reduce uncertainties, and support joint decision making by describing for patients and families the relative risks and benefits of treatment. Yet most such materials are aimed at older, often postmenopausal women, Dr. Foster noted at the joint congress of the International Psycho-Oncology Society and the American Psychosocial Oncology Society.
Approximately 20% of women with breast cancer are diagnosed before menopause. These women tend to have poorer prognosis and high-risk disease, with larger, higher-grade tumors at the time of diagnosis. In addition, they are more likely to have estrogen-receptor–negative disease and more lymph node involvement than older women. Even with successful treatment, younger women have a greater lifetime risk of local recurrence, contralateral recurrence, and distant metastases.
Young women also have special concerns about body image, disruptions of work and family life, and fears about loss of fertility and early menopause.
Dr. Foster and colleagues first interviewed 32 women with a mean age at diagnosis of breast cancer of 34. They conducted in-depth semistructured interviews and focus groups to determine how to convey information about treatments and their consequences that would help the patients in making decisions about their care.
The sample consisted of 30 white and 2 black women. In all, 22% were single, 59% had children, and 33% reported a family history of breast cancer. The majority of patients (63%) had undergone mastectomy (75% of this group also had reconstruction), and the remainder had breast-conserving surgery.
During the interviews and focus groups, the women identified specific factors as being important in their decision making, including breast cancer type (hormone receptor negative or positive, or triple-negative disease), surgical treatment (mastectomy, breast-conserving procedures, immediate or delayed reconstruction), nonsurgical therapies (radiation, chemotherapy, hormonal therapy), effects on fertility and fertility preservation options, and factors related to hospitalization, nutrition and exercise, and activities of daily living.
Participants especially expressed concerns about the effects of treatment on fertility and about having to make rapid decisions with little time to think about options.
Based on the discussions, the investigators have developed and are pilot-testing an online decision aid for young women diagnosed with early-stage breast cancer.
In a similar project, Dr. Foster and colleagues are developing a genetic testing decision aid for young women that focuses on the special concerns of those who may be carriers or high-risk mutations such as BRCA1 and BRCA2.
The work is supported by the UK National Institute for Health Research for Patient Benefit Programme and Breast Cancer Campaign. The authors reported no conflicts of interest.