# Exploring the Priorities of Patients with Early Breast Cancer in the United States: A Qualitative Interview Study and Patient-Informed Conceptual Disease Model

## TL;DR

This study explores how early breast cancer and its treatment affect women's lives in the U.S., leading to a model that can improve patient-doctor communication and care.

## Contribution

The novel contribution is a patient-informed conceptual disease model capturing the lived experiences and unmet needs of early breast cancer patients.

## Key findings

- Early breast cancer disrupts emotional, social, and financial aspects of patients' lives.
- Communication gaps between patients and healthcare providers were identified as a key issue.
- A conceptual disease model was developed to summarize patient priorities and guide future research.

## Abstract

Despite recent advances in the treatment of early-stage breast cancer (eBC), the impacts of the disease and its treatment on patients’ lives are poorly understood. This study explored the experiences and unmet needs of women with eBC in the United States. Interviews with 36 women living with eBC revealed how the disease affected them emotionally and psychologically. It also disrupted their social lives and negatively impacted their body satisfaction, daily activities, physical functioning, sexual functioning, and finances. The interviews also revealed communication gaps between healthcare providers and patients. Findings from the interviews and insights from patient experts were used to develop a “conceptual disease model” that summarizes the priorities of eBC patients. This model can help discussions between patients and their physicians on treatment and care. Our findings can also help guide future patient-focused research in eBC.

Background: Despite recent advances in new therapies for early-stage breast cancer (eBC), the impact of the current treatment landscape on patients’ quality of life remains poorly understood. This study explored the experiences and unmet needs of women with eBC, leading to the development of a patient-informed conceptual disease model (PI-CDM) that summarizes patient priorities. Methods: This qualitative study used a step-wise approach: (1) a targeted literature review; (2) draft CDM development; (3) interview guide development; (4) semi-structured interviews with women in the United States with a diagnosis of eBC; (5) thematic content analysis of interview transcripts; (6) patient steering committee insights; and (7) PI-CDM finalization. Results: Thirty-six women with eBC (stage I, n = 18; stage II, n = 11; stage III, n = 9) were interviewed between December 2023 and May 2024. Key health concepts included signs and symptoms leading to diagnosis and common treatment side effects. Emotional and psychological impacts were prominent, and 28 participants reported moderate to extremely severe anxiety or depression on the EQ-5D-5L. Other impacts included social life, body satisfaction, daily activities, physical functioning, sexual functioning, and finances. Needs for improved communication from healthcare providers about treatment options and better support were emphasized. These insights, combined with patient steering committee recommendations, resulted in a final PI-CDM. Conclusions: This study highlights the substantial burden women with eBC face and provides a framework for future patient-centric research. A CDM developed with patients summarizes the complexity of the eBC experience and can aid discussions between patients and physicians, facilitating shared decision-making to enhance care.