Methods: Using purposive sampling, semi-structured interviews were conducted with 11 patients who met the following criteria: 1) presented to the cancer center with a cancer diagnosis between August 2022 – March 2023; 2) had an Eastern Cooperative Performance Status of 0-2; and 3) were identified as being at risk for low health literacy using the Brief Health Literacy Screener or the Rapid Estimate of Adult Literacy in Medicine. Using the think-aloud method, the interviews focused on comprehending, understanding meaning, and satisfaction with the COST screener. The interviews were recorded and were transcribed verbatim. Participants received a $25 incentive for participating in the interview. Guided by selected constructs of the Health Belief Model, we used a priori coding to determine the themes.
Results: 55% percent of the sample were women; 91% were African American; and 73% reported high school/GED as their highest level of education. We identified four key content areas: Barriers, Facilitators, Experiences, and Perceptions. For barriers, participants were not accustomed to being asked for their feedback on the design of a survey and had difficulty explaining what the questions were designed to ask. For facilitators, participants found it easy to respond to the questions for themselves. For patient experiences, participants indicated significant emotional distress related to finances during their cancer diagnosis and treatment. This distress was compounded by uncertainty about the future of their illness and the potential financial consequences down the line. Participants expressed what we are calling “protective fatalism,” a belief that their struggles are inevitable and unchangeable. Finally, participants expressed positive and negative attitudes toward different COST questions and shared beliefs about financial toxicity screening that were not captured by the survey itself. Many had critiques and suggestions ranging from the repetitiveness of COST questions to the insensitivity of the way questions were worded.
Conclusions: Collaborating with the target population is critical to strengthening social impact – in this case – reducing the threat to health equity for racially and economically marginalized cancer patients who experience financial toxicity. Further, determining the acceptability of the COST in this patient population is an important step to effectively diagnosing and treating financial toxicity in diverse cancer patient populations.