A diagnosis of breast cancer is difficult at any age but for younger women, treatment decisions can be especially difficult, with implications that include their future childbearing, sexual health, and body image.
A diagnosis of breast cancer is difficult at any age but for younger women, treatment decisions can be especially difficult, with implications that include their future childbearing, sexual health, and body image. And, patients are often asked to make these decisions in a very short timeframe adding even more stress.
Gaining a better understanding of the information needs of this population and designing an accessible, tailored intervention to address them was the focus of a qualitative study reported by Clare Foster, PhD, MSc, BSc, CPsychol, at the 2015 World Congress of Psycho-Oncology held July 30-August 1 in Washington, DC. Foster is a professor of psychosocial oncology and director of the Macmillan Survivorship Research Group at the University of Southampton in the United Kingdom.
Approximately 20% of women are diagnosed with breast cancer before menopause, noted Foster, and these women generally have a poorer prognosis, larger, higher grade tumors, more lymph node involvement, and a greater lifetime risk of local, contralateral, and distant disease.
For their study, women with a diagnosis of breast cancer aged ≤40 years were enrolled from three UK hospitals to glean insight into the information they would have liked to have during the time of cancer treatment decision making. This was achieved through 20 in-depth, semi-structured interviews and two focus groups. The study involved 32 women whose average age at diagnosis was 34. Twenty-two percent of the women were single, 59% already had children, and 33% reported a family history of breast cancer.
Of the total, 37% of the participants had opted for breast-conserving surgery and 63% had mastectomies, 75% of whom had reconstruction.
Information participants identified as important included more detailed information about the different types of breast cancer, cosmetic outcomes of surgery and reconstruction, and information about treatment effects on fertility and fertility preservation options.
“They also wanted to know a great deal about preparing before and after their surgery … they wanted to know more about the role of nutrition and exercise in preventing further cancers, and, especially, what are the implications for getting on with their everyday lives,” said Foster.
Foster also shared some specific participant comments. As one young woman voiced with regard to the lack of information geared specifically to her age group: “it’s like we don’t exist; everything is tailored to 50-year-old women and to the extremes, either the very young or the very old … it would be nice to fit some of us in the middle.”
Participants found information particularly lacking in the areas of timing and options for reconstructive surgery (including a better understanding of implants), effects of treatment on fertility (including more details on what’s involved with, as well as the success rate of, fertility preservation), and issues around genetic predisposition/testing. Many participants also lamented the lack of time allowed to prepare for and choose among different treatment options in the context of their possible consequences.
“These are pretty significant implications that people are having to think about at the time of diagnosis, so preparation in the context of the need for some very rapid decisions is critical,” said Foster.
Armed with the information they collected, Foster and her team have developed a prototype intervention for which they are currently seeking funding to launch and evaluate its effectiveness. They hope this web-based decision aid will complement clinical consultations, help reduce women’s uncertainty, and support joint decision making by outlining both risks and benefits of various treatments.
“There’s evidence that web-based resources can be effective in supporting people in making decisions,” noted Foster, “reducing decisional conflict and enhancing satisfaction with the decisions people are facing.”
Foster’s research team is also developing and pilot-testing a web-based genetic testing decision aid for young women diagnosed with early-stage breast cancer.