Living Beyond Breast Cancer releases updated needs assessment of young women diagnosed with breast cancer
In September 2020, Living Beyond Breast Cancer completed a follow-up needs assessment of women diagnosed with breast cancer at or before age 45. The national survey showed that, while some areas of care for young women have improved over the last several years, there are still unmet needs before, during, and after primary treatment.
Arin Ahlum Hanson, MPH, Living Beyond Breast Cancer’s director of outreach, says LBBC will use these findings to improve existing programs and develop new ones that support young women throughout their breast cancer experience. “Continuing our long-term commitment to providing young women with tailored services and support, we developed the 2020 needs assessment to analyze young women’s changing preferences and information needs to refine our programming for future generations,” she says.
Most people diagnosed with breast cancer are diagnosed after age 50. Yet a rising number of young women living in the United States are diagnosed with breast cancer each year.
Being young at diagnosis introduces many unique experiences and social and emotional needs, often because of life stage: younger people are more likely to be at the beginnings of their career, still in school, dating, or having children. In 2012, Living Beyond Breast Cancer conducted a national needs assessment to look at the unique needs of young women diagnosed with breast cancer, as well as how they preferred to receive emotional support and breast cancer information compared to women diagnosed at older ages. The findings of the 2012 assessment guided LBBC’s development of programs within the Young Women’s Initiative.
The 2020 follow-up survey assesses progress made on areas of need identified in 2012 and explores whether and how information and support preferences have changed. Both the 2012 and 2020 needs assessments were conducted through LBBC’s Young Women’s Initiative, a program funded through a cooperative agreement with the U.S. Centers for Disease Control and Prevention.
We wanted to take an intentional look at how demographic differences impact the breast cancer experience for women diagnosed before age 45.
A total of 717 people diagnosed before the age of 45 responded to an 88-question online survey developed by LBBC. Participants did not need to be under age 45 at the time of the survey. Respondents were diagnosed with any stage and subtype of breast cancer, including metastatic breast cancer.
The survey asked detailed questions about treatment side effects, communication with healthcare providers, and how participants sought emotional support and breast cancer information. Several questions emphasized whether and how the participants felt their sexual, physical, and emotional health needs were met throughout their treatment and care. LBBC analyzed the data by race and ethnicity, cancer stage, age at diagnosis, and the length of time passed since diagnosis to look for any significant differences between these groups.
“We wanted to take an intentional look at how demographic differences impact the breast cancer experience for women diagnosed before age 45,” says Janine E. Guglielmino, MA, LBBC’s vice president of mission delivery. “It’s important to be able to take deliberate action on demographic differences in order to give people the support they need and meet them where they are.”
The majority (72.4 percent) of respondents were Caucasian, followed by 14.2 percent Black or African American, and 5.6 percent Hispanic. Due to the low recruitment of people of other ethnicities, the findings only reflect Caucasian, Black, and Hispanic participant responses and may not be easily applied to other ethnic group experiences.
Overall, the 2020 needs assessment found that breast cancer diagnosis and its treatment causes significant physical and emotional impacts on women diagnosed before age 45, and that a woman’s race and ethnicity, cancer stage, and how much time has passed since diagnosis lead to differences in how women experience those physical and emotional impacts.
- Sexual health and fertility
Many participants reported diagnosis and treatment had a significant impact on their sexual health, yet most reported that their healthcare provider was unable to help address sexual health needs. Likewise, this assessment found virtually no improvement in the likelihood of healthcare providers discussing the impact of treatments on future fertility: The percentage of young women reporting discussions about fertility with their healthcare providers and the percentage reporting they initiated the conversation themselves remain relatively unchanged from 2012 to 2020.
- Genetic testing and counseling
The 2020 assessment showed improvement in the number of young women receiving genetic counseling alongside genetic testing. While only half of the 2012 respondents who reported getting genetic testing reported speaking with a genetic counselor, nearly 73 percent of 2020 respondents who had testing reported speaking with a counselor. Still, the 2020 data shows disparities in both testing and counseling based on race and ethnicity.
- Emotional support and breast cancer information preferences
While the 2012 cohort overwhelmingly reported not knowing where to find information and support targeted to young women diagnosed with breast cancer, the 2020 needs assessment found that most young women knew where to find targeted resources adequate to their needs. A woman’s race and ethnicity, and cancer stage, impacted how she preferred to access breast cancer information and emotional support.
More Black women felt it very important to connect with women who shared their ethnic background than did participants of other ethnic backgrounds. More Black and Hispanic women also reported feeling it very important to connect with women who shared their diagnosis than did participants from other ethnic groups.
In terms of cancer stage, women diagnosed with DCIS were most likely to prefer social media for emotional support and connection, while young women living with metastatic breast cancer rated all types of emotional support services highly, with a lower interest in in-person support.
The 2020 national needs assessment of young women diagnosed with breast cancer revealed that while some aspects of the breast cancer experience have improved for women diagnosed before age 45, there remain a number of gaps in their care and survivorship needs. These gaps are even more pronounced when demographics such as race and ethnicity are considered. Living Beyond Breast Cancer, healthcare providers serving young women with breast cancer, and other advocacy organizations should consider these findings when developing future programs and trainings.
Download 2020 Needs Assessment Key Findings
Download 2020 Needs Assessment press release
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