Quality of Life Concerns of Young Breast Cancer Survivors in the U.S. Gulf States by Race at Treatment and One-year Post-treatment

Abstract

Background: Young breast cancer survivors (YBCS) face greater needs than their older counterparts. These needs require characterization for success of breast cancer assistance programs because needs vary by survivor race and where they are in their survivorship journey. This study evaluated quality of life (QOL) for YBCS in three states with poorer survivorship outcomes and identified differences in QOL for white and African American (AA) YBCS.Methods: A survey identifying QOL needs was sent to YBCS in Louisiana, Mississippi, and Alabama. It assessed domains including relationships, women’s health, employment, fertility, and menopause. The survey was resent to participants after one-year completion of the first survey to identify QOL changes.Results: Overall, 371 baseline surveys and 127 follow-up surveys were collected. At baseline, AA YBCS faced more problems in five QOL domains and were less likely to have spoken with healthcare providers about genetic testing for breast cancer than white YBCS. After one year, all YBCS showed improvement in five different QOL domains, but indicated an increase in memory problems. Conclusion: Survey results reflect existing literature that AA YBCS face greater QOL issues as well as disparities in the provision of genetic counseling. Additionally, all YBCS require more counseling from providers related to various physical and psychological symptoms. This survey identified QOL deficiencies faced by YBCS and differences based on survivor race. Defining and understanding these features allows for the development of culturally appropriate programming for survivors, while adapting to YBCS’ QOL changes as they move further from treatment.