Major
Public Health
Anticipated Graduation Year
2022
Access Type
Restricted Access
Abstract
Young breast cancer survivors (YBCS) < 45 years old comprise an estimated 11% of all cases in the U.S. Approximately 4% are diagnosed with de novo metastatic breast cancer (dnMBC), due in part to delays in diagnosis. Little is known about how young women navigate a diagnosis and the barriers resulting in delays.
We conducted a qualitative study of diagnosis among YBCS to explore their paths to diagnosis. We administered a 52-item online survey to a convenience sample of YBCS (n=163) including open-ended questions about diagnosis experience and multiple-choice and short answer questions on demographics and disease status. This analysis focuses on young women diagnosed with dnMBC (n=33). Data were analyzed using qualitative methods of content analysis.
Our analysis generated a patient-experience model of dnMBC in YBCS comprised of four-phases in which young women discover symptoms, explore symptoms with a healthcare provider (HCP), investigate abnormal findings, and confirm a dnMBC diagnosis. The path to diagnosis is shaped by both barriers and facilitators, including personal, social, financial, clinical, and healthcare system factors.
The location of symptoms is a key factor in the path to diagnosis; the dnMBC diagnosis experience of individuals with breast symptoms is considerably different from those with no breast symptoms.
A detailed patient-experience model of dnMBC diagnosis identifies opportunities for healthcare system interventions to address the challenges young women face. Appropriate evaluation of breast symptoms may reduce delays, potentially reducing the number of young women diagnosed with dnMBC. Information and support tailored to young women newly diagnosed with dnMBC can reduce distress and enhance communication between patients and the cancer care team.
Community Partners
The University of Illinois Cancer Center; The Centers for Disease Control and Prevention Cooperative Agreement NU58DP006674
Faculty Mentors & Instructors
Julie Darnell, PhD Parkinson School of Public Health; Justin Harbison, PhD Parkinson School of Public Health; Anthony Mcintosh, M.S. Parkinson School of Public Health
Supported By
Tamara Hamlish, PhD University of Illinois Cancer Center
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.
Identifying Opportunities to Improve Path to Diagnosis of de novo Metastatic Breast Cancer in Young Women
Young breast cancer survivors (YBCS) < 45 years old comprise an estimated 11% of all cases in the U.S. Approximately 4% are diagnosed with de novo metastatic breast cancer (dnMBC), due in part to delays in diagnosis. Little is known about how young women navigate a diagnosis and the barriers resulting in delays.
We conducted a qualitative study of diagnosis among YBCS to explore their paths to diagnosis. We administered a 52-item online survey to a convenience sample of YBCS (n=163) including open-ended questions about diagnosis experience and multiple-choice and short answer questions on demographics and disease status. This analysis focuses on young women diagnosed with dnMBC (n=33). Data were analyzed using qualitative methods of content analysis.
Our analysis generated a patient-experience model of dnMBC in YBCS comprised of four-phases in which young women discover symptoms, explore symptoms with a healthcare provider (HCP), investigate abnormal findings, and confirm a dnMBC diagnosis. The path to diagnosis is shaped by both barriers and facilitators, including personal, social, financial, clinical, and healthcare system factors.
The location of symptoms is a key factor in the path to diagnosis; the dnMBC diagnosis experience of individuals with breast symptoms is considerably different from those with no breast symptoms.
A detailed patient-experience model of dnMBC diagnosis identifies opportunities for healthcare system interventions to address the challenges young women face. Appropriate evaluation of breast symptoms may reduce delays, potentially reducing the number of young women diagnosed with dnMBC. Information and support tailored to young women newly diagnosed with dnMBC can reduce distress and enhance communication between patients and the cancer care team.