Abstract P4-12-06: A patient experience model of diagnosis of pregnancy associated breast cancer (PABC)

Abstract

Abstract Breast cancer is the most prevalent malignancy in pregnancy. Pregnancy-associated breast cancer (PABC), defined here as cancer detected during pregnancy or in the first year after miscarriage or delivery, accounts for nearly 7% of breast cancers in women under 45 years of age. This rate nearly doubles among women under 35. While there is increasing attention to the pathology of PABC, little is known about the pathways to diagnosis, how these young women navigate these pathways, and the barriers resulting in delays. Methods We conducted a qualitative study of young breast cancer survivors (YBCS) under age 45 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 the subset of women diagnosed with PABC (n=26). Data were analyzed using qualitative methods of content analysis. Results Our analysis generated a patient-experience model of YBCS diagnosis comprised of four phases: discovery, exploration, investigation, and confirmation. In discovery, women with PABC often delayed seeking care, attributing breast changes to pregnancy or breastfeeding and waiting to explore symptoms until their next scheduled clinic appointment. Participants also reported delays following discovery due to availability of newborn/child-care or insurance issues. In exploration, women with PABC frequently relied on their regular healthcare provider to assess their symptoms. They reported that providers often expressed confidence that symptoms were due to pregnancy or breastfeeding and did not recommend further investigation until symptoms worsened. Women with PABC generally demonstrated trust in providers’ assessments of symptoms, with limited evidence to suggest that respondents requested more aggressive or timely evaluation. In investigation, women with PABC reported that when symptoms progressed, the pace of the diagnostic process shifted, moving quickly with few delays or barriers, and rapid scheduling for diagnostic testing and follow-up managed by the healthcare provider. This rapid pace continued through confirmation, when respondents noted prompt, short intervals between diagnostics and intensive activities in preparation for treatment. Women with PABC also noted they often received referrals for mental health support as part of the diagnosis process. While participants reported frequent reliance on their partner, mother, and mother-in-law for support, they often experienced isolation due to the time and effort required to care for a newborn during preparation for breast cancer treatment. Conclusions This patient-experience model of pregnancy associated breast cancer diagnosis in young women documents the timing and nature of delays, including the phases where delays occur most frequently, and can help inform the development and evaluation of targeted interventions to improve timely care. Delays experienced in the discovery and exploration phases are often due to the attribution of symptoms to pregnancy or breastfeeding by both patients and possibly their healthcare providers. The intensity and pace of the diagnostic process shifts notably when symptoms progress, with healthcare providers taking an active role to ensure rapid diagnosis and treatment planning. The model identifies opportunities for health care systems to address barriers and facilitators to the diagnostic process for PABC and improve quality of care across all phases. A detailed understanding of the PABC patient experience identifies opportunities to reduce barriers to care, facilitate timely diagnosis, and provide a roadmap to support the unique needs of young women undergoing an evaluation for breast cancer while pregnant or postpartum. Citation Format: Tamara Hamlish, Sarah Strom, Pamela Ganschow. A patient experience model of diagnosis of pregnancy associated breast cancer (PABC) [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-12-06.