Defining the Unique and Persistent Needs of Young Women Living with Metastatic Breast Cancer through a Multi-Phased Needs Assessment

Arin Ahlum Hanson, MPH, CHES, and  Janine Guglielmino, MA, Living Beyond Breast Cancer
Kimlin Ashing, PhD, City of Hope; Kathy Meyers, PhD, Independent Researcher

Background

 A recent research study shows an increase in the diagnosis of metastatic breast cancer (MBC) in women between 25-39 years old. The experiences and psychosocial needs of young women with MBC can differ from those of both older women and younger women diagnosed with early-stage breast cancer. There are limited programs and resources that address the unique needs of young women living with MBC. In spring 2012, Living Beyond Breast Cancer conducted a comprehensive assessment to identify the needs of women diagnosed with early-stage and MBC younger than age 45 and to determine how each group prefers to receive emotional support and breast cancer information.

Methods

LBBC conducted a focus group of young women living with MBC (n=14) and compared the findings with a focus groups of young women diagnosed with early-stage breast cancer(n=20). An 85-question survey was completed by 1,474 women who had been diagnosed with breast cancer younger than age 45. Of this sample, 171 women were living with MBC. Sixty were initially diagnosed with MBC and 111 progressed to MBC after initial diagnosis. For this analysis, the responses of women living with MBC were compared to women diagnosed with early-stage disease.

Results

Key differences in needs were found among focus group and survey respondents living with MBC and those diagnosed with early-stage disease. Key findings were greater negative financial impact; current symptoms and side effects for women living with MBC compared to women with early stage breast cancer. Young women with MBC were more likely than women with early-stage disease to report using social media to access breast cancer information and emotional support. When asked about educational topics of greatest interest, young women with MBC were more interested than women with early-stage disease in learning about current treatment options, clinical trials and anxiety and depression. Young women with MBC were more likely to frequently seek information about breast cancer compared to women with early-stage disease.

Conclusion

More programs and resources should be developed to fill the gaps and address the unique needs of young women living with MBC. These assessment results will help oncology nurses guide program andresource development.

Exhibition

Advanced Breast Cancer Second International Consensus Conference, November 2013 (poster)

Oncology Nursing Society Annual Congress, May 2014 (poster and oral)

Association of Oncology Social Workers Annual Conference, June 2014 (poster)

5th Annual Academy Oncology Nurse Navigators Conference, September 2014 (poster)