Major

Public Health

Anticipated Graduation Year

2022

Access Type

Restricted Access

Abstract

Young breast cancer survivors (YBCS) < 45 years old comprise only 11% of all cases; however, late-stage diagnosis and mortality are significantly higher compared to older women. These disparities result in part from delayed diagnosis. One study shows 80% of YBCS find breast abnormalities on their own, however little is known about how young women navigate a diagnosis.

The purpose of this study is to understand barriers to diagnosis among YBCS.

We conducted a qualitative study of diagnosis among YBCS. We administered a 52-item online-survey including open-ended questions about diagnosis experience and multiple-choice and short answer questions on demographics and disease status. A convenience sample of YBCS (n=200) completed the survey. Data were analyzed using descriptive statistics and content analysis.

Preliminary analysis of 19 respondents age ≤ 30 focused on the specific challenges of the youngest cohort. We identified three themes: financial toxicity, psychosocial and practical support, and clinical care and navigation. A fourth theme, empowerment, cuts across all themes. Challenges to diagnosis in YBCS include limited familiarity with the healthcare system, healthcare provider resistance, housing, employment, or insurance instability, and emotional distress. Mothers, partners, and online peers provided support during the diagnosis. YBCS called into question the impact of delays on cancer outcomes.

YBCS face considerable personal, social, and systemic challenges to obtaining a timely breast cancer diagnosis. Future analysis will compare these results with data from cohorts diagnosed at 30-45 years old.

Understanding the unique challenges to YBCS diagnosis can facilitate timely diagnosis and improve outcomes.

Faculty Mentors & Instructors

Julie Darnell, Dr. Parkinson School of Public Health;

Supported By

University of Illinois Cancer Center

Creative Commons License

Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

Share

COinS
 

“Cancer care is not meant for young adults”: A Qualitative Study of Young Women Navigating a Breast Cancer Diagnosis

Young breast cancer survivors (YBCS) < 45 years old comprise only 11% of all cases; however, late-stage diagnosis and mortality are significantly higher compared to older women. These disparities result in part from delayed diagnosis. One study shows 80% of YBCS find breast abnormalities on their own, however little is known about how young women navigate a diagnosis.

The purpose of this study is to understand barriers to diagnosis among YBCS.

We conducted a qualitative study of diagnosis among YBCS. We administered a 52-item online-survey including open-ended questions about diagnosis experience and multiple-choice and short answer questions on demographics and disease status. A convenience sample of YBCS (n=200) completed the survey. Data were analyzed using descriptive statistics and content analysis.

Preliminary analysis of 19 respondents age ≤ 30 focused on the specific challenges of the youngest cohort. We identified three themes: financial toxicity, psychosocial and practical support, and clinical care and navigation. A fourth theme, empowerment, cuts across all themes. Challenges to diagnosis in YBCS include limited familiarity with the healthcare system, healthcare provider resistance, housing, employment, or insurance instability, and emotional distress. Mothers, partners, and online peers provided support during the diagnosis. YBCS called into question the impact of delays on cancer outcomes.

YBCS face considerable personal, social, and systemic challenges to obtaining a timely breast cancer diagnosis. Future analysis will compare these results with data from cohorts diagnosed at 30-45 years old.

Understanding the unique challenges to YBCS diagnosis can facilitate timely diagnosis and improve outcomes.