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MedStar Health Research Institute is collaborating with the DC Department of Health to investigate the reasons for refusal, discontinuation, or delay of breast cancer treatment and to identify potential interventions.
Breast cancer care has become more precise and advanced over the past decade, by improving the survival rates and reducing breast cancer mortality rates. Yet in approximately 10% of cases, treatment is delayed two months or more after diagnosis, often due to socioeconomic factors outside a patient’s control.
MedStar Health Research Institute (MHRI) is launching a new research project to understand why — and to identify opportunities to connect patients with accessible, life-saving treatment sooner.
In the spring of 2024, DC Health approached my MHRI Healthcare Delivery Research Network team, interested in understanding why patients were refusing and delaying recommended breast cancer treatment, and how to better identify and support patients during treatment decision-making.
Even before the COVID-19 pandemic forced delays in breast cancer care, the median timeline from diagnosis to treatment initiation increased from three to four weeks— an increase of 2-3 days compared with 20 years ago. Delaying breast cancer treatment by just four weeks significantly increases the risk of death and can lead to more aggressive and costly treatments.
Our goal is to help connect more patients in our community with the information they need to make informed decisions about their care and access timely breast cancer treatment. Through surveys and interviews in English and Spanish, our researchers ask specific questions of patients, caregivers, and providers to understand the factors resulting in declined, discontinued, or delayed breast cancer treatment beyond 30 days after diagnosis.
What are common barriers to breast cancer care?
My training is in clinical health psychology, and I have special training in working with patients who have lived with cancer. Through conversations with our patients, community members, and providers, we know that many factors in breast cancer decision-making are beyond a patient’s control, including:
- Lack of childcare or adult dependent care
- Coverage and cost of treatment
- Limited transportation
- Not knowing the treatment options or understanding the disease
- Dealing with multiple comorbidities
- Disability and associated challenges
- Difficulty navigating the medical system
- Inability to miss work for appointments or treatment sessions
Our study asks people who have lived through this experience to discuss what they wished they knew at diagnosis, what influenced their decisions, and what the healthcare team and DC Health can realistically do to help reduce barriers to care.
How does the study work?
Existing literature defines a treatment delay as 30-90 days after diagnosis. For this research, we define delaying treatment as beginning treatment 30 or more days after diagnosis. We have designed separate surveys and one-on-one interview guides for providers, patients, and family caregivers.
Nonclinical study participants will get a gift card after completing an interview or survey. To be eligible, a person must have been diagnosed with breast cancer in the past five years (or served as a patient’s family caregiver) and must:
- Understand English or Spanish
- Live in DC or were diagnosed or treated for breast cancer in DC
- Have a working telephone number
MedStar Health providers are helping to identify patients and providers for outreach. Local health centers and advocacy organizations such as Thelma D. Jones Breast Cancer Fund, a D.C. nonprofit dedicated to improving education about and access to evidence-based breast cancer treatment, are partnering with us to find individuals to share their stories.
Questions we will ask patients include:
- How did the provider talk about the treatment options available to them?
- What factors prevented them from starting treatment?
- What questions did they have when making treatment decisions?
- What personal factors did they take into consideration when making decisions?
- What information did they wish they had at that time?
Similar questions will be asked of providers from their perspective. Based on what they hear from patients, we will ask for their recommendations to improve access to breast cancer care.
Future impacts of this research.
Data from the study, which began July 22, will be paired with recommendations from our research advisory board committee to inform a new tool to aid patient-provider communication. Right now, we envision this to be a toolkit that could include:
- Frequently asked questions about breast cancer and treatment and other communication strategies to improve communication with providers
- Definitions of available treatment options
- Community and health system resources to alleviate barriers to care
Providers can make a big difference in whether the patient engages in treatment. Sharing accurate information, listening to patients, and answering questions builds rapport and trust with patients, improving communication and informed decision-making.
MedStar Health Research Institute is leading this project because we care about our patients and community and are committed to constant improvement. We want to empower patients to get the care they choose on their terms and connect to that care faster.
