Understanding Barriers to Care for a Rare Cancer Type

A biopharmaceutical manufacturer sought to better understand the factors that impede or facilitate access to care among women with a rare form of cancer known to be associated with various disparities in treatment and outcome. Traditional studies of these barriers and facilitators rely mainly on quantitative analyses of claims data and real-world clinical evidence, providing a limited understanding of the patient journey. This approach, while often utilized, results in an incomplete picture of barriers and facilitators to care and hence suboptimal strategies for understanding and increasing patient access.

We conducted a thorough literature review of studies on disparities in the patient journey for the relevant cancer type. Through the literature review, we identified disparities based on age and social determinants of health (SDOH) and mapped the existing evidence landscape to identify key knowledge gaps. Based on insights gained from our literature review, we designed a mixed-methods study that included an analysis of claims data from Medicaid and commercial payers and semi-structured qualitative interviews with patients.

Leveraging our claims analysis, we defined and characterized a patient cohort for our quantitative analyses. In parallel, we recruited a cohort of patients, aligned to the claims cohort in terms of age, race/ethnicity, geography (rural vs. urban residence), and insurance type, to participate in qualitative interviews.

Our study identified barriers and facilitators to diagnosis and treatment across all demographic groups, as well as specific barriers disproportionately impacting patients belonging to racial/ethnic minorities. It revealed that, compared to White women, Hispanic and Black women may face longer time between diagnosis and treatment. We also found delays in time from diagnosis to treatment among patients living in urban areas, possibly due to lack of trust in the healthcare system as well as the complexity of coordinating care within large urban healthcare organizations. Interview respondents who were Black or Hispanic cited financial hardships, lack of information, and limited access to patient navigators as barriers to care and causes of diagnosis and treatment delays. These insights helped contextualize claims data showing higher rates of emergency department visits among Black and Hispanic patients, indicating a need for culturally competent care to better serve these populations.

The client plans to use the findings from our study to inform methods in overcoming barriers and providing facilitators to care for the relevant cancer type, targeting its investments to support the most effective strategies across different patient populations.