Fragmented ownership and multilevel barriers to breast MRI screening among high-risk women: A qualitative study informing development of clinical decision support

Technical Summary: Fragmented Ownership and Multilevel Barriers to Breast MRI Screening

Problem Statement
Despite professional guidelines from the National Comprehensive Cancer Network (NCCN) and the American College of Radiology (ACR) recommending supplemental breast magnetic resonance imaging (MRI) for women at high risk of breast cancer, utilization rates remain low (23–32%). High-risk populations include women with pathogenic variants in hereditary breast cancer predisposition genes, high-risk benign breast lesions, or a lifetime risk exceeding 20% based on validated models. While randomized controlled trials (e.g., DENSE, FaMRIsc, WISDOM) support the efficacy of supplemental MRI in reducing interval cancers and improving early detection, significant disparities exist in access and uptake. Current barriers include limited use of formal risk assessment, insufficient provider and patient knowledge, and challenges in care coordination. Primary care providers (PCPs) often rely on family history-based judgment rather than validated models, resulting in low recommendation rates for eligible patients.

Methodology
This qualitative study was conducted at an urban academic medical center in New York City to inform the development of a screening module for the RealRisks patient-facing web-based decision aid. The research team conducted semi-structured interviews with two distinct groups:

1. Healthcare Providers (N=17): Including primary care providers (PCPs), gynecologists, breast radiologists, and cancer genetic counselors.
2. High-Risk Patients (N=20): Women with pathogenic variants, high-risk benign lesions, or a lifetime risk >20%, aged ≥21, without a personal history of breast cancer.

Interviews were guided by the Theoretical Domains Framework to identify modifiable barriers and facilitators across knowledge, skills, beliefs, and context. Data were transcribed verbatim and analyzed thematically using Dedoose software. The study employed an iterative coding process to identify patterns in communication strategies, screening practices, and implementation barriers.

Key Findings
The analysis revealed three primary themes characterizing the barriers to breast MRI screening:

1. Fragmented Responsibility and Initiation:

   • Diffused Ownership: There is a lack of clear ownership regarding who initiates MRI screening. PCPs and gynecologists often view themselves as gatekeepers who should refer to specialists, while radiologists view risk stratification as the responsibility of referring clinicians. This creates a "gap" where no single provider group assumes responsibility for initiating screening outside of specialized high-risk clinics.
   • Tool Underutilization: Although 71% of providers had used risk assessment tools, only a minority used them regularly due to time constraints and perceived complexity. Radiologists reported no use of formal risk calculators, citing scope-of-practice boundaries.
   • Reliance on Specialists: Most providers (82%) indicated that managing high-risk screening pathways should reside with breast health specialists (e.g., breast surgeons, oncologists, genetic counselors), leading to heavy reliance on referrals rather than direct management in primary care or gynecology settings.

2. Compounded Multilevel Barriers:

   • Provider Limitations: Providers cited significant knowledge gaps regarding MRI risks, follow-up protocols, and inconsistent guidelines across professional societies. Time constraints during clinical encounters further hindered effective counseling.
   • Insurance Uncertainty: Both patients (40%) and providers (41%) identified unclear insurance coverage and cost concerns as major deterrents.
   • Patient Burdens: Patients faced emotional anxiety (fear of false positives), procedural discomfort (claustrophobia), and logistical challenges (scheduling). Misconceptions were also prevalent, including fears of radiation exposure from MRI and confusion regarding the necessity of MRI versus mammography.

3. Need for Consolidated Guidelines and Accessible Education:

   • Guideline Clarity: Providers expressed a need for concise, unified guidelines and decision support tools integrated into the Electronic Medical Record (EMR) to streamline risk assessment and ordering.
   • Educational Gaps: Patients required clearer education on the benefits of MRI, the interpretation of results (e.g., BI-RADS scores), and the screening process. Providers noted that inconsistent messaging among clinicians undermines patient trust.

Contributions and Proposed Interventions
The study's primary contribution is the systematic mapping of qualitative findings to specific intervention components for the RealRisks (patient) and BNAV (provider) decision support tools. The authors propose the following targeted interventions based on the identified barriers:

• For Providers (BNAV):

  • Implementation of EMR-integrated risk assessment (e.g., Ambry CARE®) to calculate Tyrer-Cuzick scores prior to visits.
  • Creation of "Tip Sheets" summarizing risk-based screening guidelines.
  • Development of "Smartphrases" in the EMR that trigger screening recommendations based on calculated risk scores.
  • Inclusion of talking points and FAQs to assist providers in counseling patients on high-risk management and result interpretation.

• For Patients (RealRisks):

  • Visual comparisons of screening modalities to highlight the added sensitivity of MRI for high-risk populations.
  • Modules addressing procedural anxiety and physical discomfort by explaining the screening process.
  • Plain-language explanations of false positives (using analogies like fire alarms) and the BI-RADS scoring system.
  • Actionable guidance on verifying insurance coverage and navigating financial assistance.

Significance and Claims
The paper positions itself as a pre-implementation study that bridges the gap between qualitative barrier identification and clinical decision support (CDS) design. The authors claim that by directly integrating patient and provider perspectives into the development of RealRisks and BNAV, the resulting tools will be grounded in the actual barriers faced by the target population.

The study emphasizes that addressing structural and communication barriers is essential for improving MRI uptake. It suggests that integrating risk assessment and educational materials into routine clinical workflows can support informed, shared decision-making, particularly for PCPs and gynecologists who currently defer to specialists. The authors note that future work will involve usability testing of these modules (available in English and Spanish) followed by a randomized controlled trial to evaluate their effectiveness in improving screening-related decision-making and patient outcomes.

Limitations
The authors acknowledge that the provider sample was entirely female and drawn from a single academic medical center, which may limit generalizability to community or rural settings. Additionally, the sample was skewed toward individuals already engaged in the screening process (55% of patients and 59% of providers had prior MRI experience), potentially underrepresenting barriers faced by less-engaged populations. The small number of radiologists and genetic counselors also precluded within-specialty comparisons.