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Key Findings from Living Beyond Breast Cancer’s National Needs Assessment of Young Women Affected by Breast Cancer

Published February 2013

Arin Ahlum Hanson, MPH, CHES, Janine E. Guglielmino, MA, Living Beyond Breast Cancer with Kimlin Ashing-Giwa, PhD, City of Hope Medical Center

Background: Ten percent of breast cancer cases occur in women under 45 years old. Although younger women are less likely to be diagnosed, their treatment experience and psychosocial needs can differ, making it a significant public health concern for women diagnosed in this age group.Living Beyond Breast Cancer conducted a national needs assessment to identify the needs of women diagnosed with breast cancer before age 45 and determine how they prefer to receive emotional support and breast cancer information from their healthcare providers and support organizations.

Methods: The needs assessment included four phases. 1) An environmental scan was conducted to identify resources for young women. 2) Key informant interviews were conducted with 12 healthcare providers. 3) Four focus groups were held with 32 women. 4)A national survey was drafted using information collected from the interviews and focus groups. This 85-question survey was completed by 1,474 women diagnosed with breast cancer under age 45. The survey asked women where they go for emotional support and cancer information, how they want to receive support and information and what information topics interest them. Demographic information was collected.

Results: The assessment concluded that there are limited national resources that address the unique needs of young women. Ninety percent of the survey respondents said it was important to have health information about breast cancer tailored to their needs as young women, but only 22% found it easy to find this type of information. Certain subgroups reported having a more difficult time finding information and support, including women diagnosed before age 30, African-Americans and women living with metastatic breast cancer. Many young women report lingering side effects; 50% reported fatigue, sleep disruption, decreased interest in sex and weight changes. Only half reported discussing fertility with a healthcare provider.

Conclusion: More programs and resources should be developed to address the unique needs of young women affected by breast cancer. Given that oncology nursing and social work have led in the delivery of survivorship research, patient navigation and survivorship care, oncology nursing and social work can play a central role in the advocacy, training and practice in addressing the needs of young women.

Download a PDF of the executive summary.

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