Abstract PD8-07: The Changing Informational Needs of Young Women Affected by Breast Cancer: A National Needs Assessment
Authors: Hanson Arin , Guglielmino Janine , Ormerod Catherine , Katze Nicole , Teteh Dede , Ericson Marissa 
Published: March 2023

Background: Nearly 9% of new breast cancer diagnoses in the United States are in women under the age of 45. In 2012, Living Beyond Breast Cancer (LBBC) conducted a four-phase needs assessment of young women diagnosed with breast cancer at or before age 45, which identified needs and service gaps in resources addressing the unique needs of this age group and explored how these women prefer to receive emotional support and breast cancer information. In 2020, LBBC conducted another assessment to better understand young women’s service preferences and information needs. The 2020 assessment focused specifically on demographic differences and targeted content areas, including sexual health and long-term impacts on physical and emotional health. Methods: An 88-item online questionnaire was administered via REDCap between August and September 2020. Inclusion criteria were women diagnosed with breast cancer at or before age of 45 who were living in the United States. The survey included questions about respondents’ experiences with treatment side effects, communication with their healthcare providers, and how they sought emotional support services, and breast cancer information. Questions centered on sexual, physical, and emotional health needs of respondents throughout their treatment journey. Special focus was placed on participants’ demographic information, including race/ethnicity, cancer stage, and time elapsed since diagnosis. Results: Overall, breast cancer diagnosis and treatment caused significant physical and emotional impacts on women diagnosed before age 45 (N=717), and a woman’s race/ethnicity, cancer stage, and time elapsed since diagnosis resulted in differences in their experiences. In addition, how a woman preferred to receive emotional support services and breast cancer information differed based on her race/ethnicity, and cancer stage. Many participants (64%) also reported significant impacts to their sexual health, yet their healthcare providers were unable to address those needs. Compared to women diagnosed at other stages, those diagnosed with stage III and stage IV breast cancer reported significantly higher percentages of problems with little or no interest in sex. How a woman preferred to receive emotional support services and breast cancer information differed based on her race/ethnicity, and cancer stage. The 2020 survey also showed that although eight years have passed since the original LBBC needs assessment, the percentage of young women reporting discussions about fertility with healthcare providers (48%) remain largely unchanged. Additionally, more respondents in the 2020 survey reported accessing genetic counseling (72%) and testing services (90%) than the 2012 survey participants, but in 2020, the data indicated significant disparities in both counseling and testing based on race/ethnicity. Conclusion: Young women diagnosed with breast cancer before age 45 reported several significant differences in service preferences and information needs based on race/ethnicity and cancer stage. While some aspects of the breast cancer experience have improved, there remain several gaps in care and survivorship needs, including sexual health. Informational materials and supportive programming may address these gaps by accounting for differences among the diversity of people diagnosed in this age group.

Citation Format: Arin Hanson, Janine Guglielmino, Catherine Ormerod, Nicole Katze, Dede Teteh, Marissa Ericson. The Changing Informational Needs of Young Women Affected by Breast Cancer: A National Needs Assessment [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr PD8-07.