A qualitative study to explore the patient experience of living with early breast cancer and perspectives on survivorship.

Abstract

429 Background: With advancements in treatment and better screening, the 5-year survival rate for breast cancer overall is 92%, with the greatest odds during Stages I-III. With a prolonged outlook, understanding aspects of health-related quality of life (HRQoL) that are important to early-stage patients is critical. This study aimed to understand the patient experience of living with early breast cancer (eBC), including perspectives related to treatment and survivorship. The findings help identify which aspects of HRQoL are meaningful to patients with eBC and inform conceptual relevance for clinical outcomes assessment (COA) measurement strategies in future clinical trials and other patient-centered research. Methods: This was a cross-sectional, US-based, qualitative study in adult patients with stage II/III ER+/HER2- eBC who had experience with endocrine therapy. Patients were recruited via clinician referral through a healthcare fieldwork company. Previous qualitative research, a targeted literature review, and a patient/clinician steering committee were used to inform the development of a semi-structured, concept elicitation interview guide. Questions elicited information around the patients’ experience with eBC, including symptoms, impacts, and survivorship. All participants provided informed consent. One-hour interviews were conducted via web-based platform then transcribed. Qualitative analysis was completed to identify themes and patterns. Sample characteristics were summarized using descriptive statistics. Results: Twenty patients completed interviews. Most were stage II (80%) and 3.9 ±3.7 years from diagnosis (range: 1-15). All were female (mean age 50.0±12.2 years); most were White (80%) and not Hispanic/Latino (90%). A variety of symptoms were reported as most bothersome or important to improve, including energy/fatigue (75%), hair loss (56%), muscle/joint pain (56%), and vaginal symptoms (44%). All patients (100%) described experiencing impacts on physical, emotional, and social functioning as well as appearance. Patients described their experiences with eBC from the point of diagnosis onward, mentioning changes in their outlook on life by valuing life more (50%) and reprioritizing (40%). For half of the patients, the term “survivorship” did not resonate, explaining that it implied their journey was over when it was not. When asked for descriptors of their eBC journey, five major categories emerged: 1) transformation; 2) resilience; 3) challenge; 4) mixed feelings; 5) uncertainty. Conclusions: This study provides valuable evidence around the patients’ experience of living with eBC, including symptoms, impacts, and long-term outlook on life. The results highlight the need to ensure COA measurement strategies in eBC reflect meaningful patient-relevant concepts, from diagnosis through treatment and into long-term survival.