Using a National Needs Assessment to Direct Programs for Young Women Affected by Breast Cancer

Introduction

Ten percent of breast cancer cases occur in women under 45 years old. Although younger women are less likely to be diagnosed, their survivorship needs can differ, making breast cancer a significant public health concern for women in this age group. To address this need, Living Beyond Breast Cancer developed new national programming for young women, after conducting a comprehensive needs assessment and selecting program priorities based on assessment findings. This project was funded through a cooperative agreement with Centers for Disease Control and Prevention.

Methods

First, LBBC identified the needs of women diagnosed with breast cancer before age 45 and determined how young women prefer to receive emotional support and breast cancer information. Needs assessment phases included:

1) An environmental scan to identify existing resources

2) Key informant interviews with 12 healthcare providers

3) Four focus groups with 32 women

4) An 85-question national online survey completed by 1,474 women diagnosed with breast cancer under age 45.

LBBC analyzed findings by stage, ethnicity, age and time since diagnosis and set program priorities based on these findings.

Results

The needs assessment findings led LBBC to prioritize creating online resources for young women, expansion of our Breast Cancer Helpline, development of the Young Advocate Program, and educating healthcare providers on the needs of young women. The needs assessment showed that women diagnosed before age 30, women living with metastatic breast cancer and African-American women reported different needs and interests in health information. LBBC expanded resources for each of these subgroups.

Conclusion/Implications

Preliminary evaluation data show LBBC’s new program offerings are increasing knowledge and support. This process demonstrates the benefits of using needs assessments to drive program development. This model can be used for other cancer survivor populations, where knowledge of their needs and program offerings is lacking.

To address this need, Living Beyond Breast Cancer conducted a comprehensive national needs assessment, selected program priorities based on this needs assessment and developed national programming for young women affected by breast cancer.

LBBC successfully expanded program offerings to better serve young women.

Exhibition

7th Biennial Cancer Survivorship Research Conference, June 2014 (poster)

2nd Breast Cancer in Young Women Conference (BCY2), November 2014 (poster)

Critical Mass Annual Conference, November 2014 (podium)