Abstract
ABSTRACT
Background
Cancer‐related financial hardships are common and negatively impact cancer‐related outcomes. Supporting patient‐clinician cost discussions, financial navigation, and insurance literacy may help mitigate this distress. This qualitative study informed the adaptation of the “Improving Cancer Patients’ Insurance Choices” (I Can PIC) tool into the “Cancer Affordability REsources” (CARE) Tool by updating content, design, and implementation processes.
Methods
Patients ≥ 18 years, diagnosed with lung, prostate, colorectal, or gynaecological cancer within 3 years, English‐speaking, and treated at specified urban or rural cancer centres were included. Healthcare personnel (HP) were employed at one of these cancer centres and worked with the specified cancer types. The Consolidated Framework for Implementation Research (CFIR) and the 5As of Access in Healthcare Framework guided the development of semi‐structured interview guides and codebook. Interviews were conducted virtually, transcribed professionally, coded, and analysed using rapid thematic analysis.
Results
Twenty‐two patients with cancer and 14 HP from urban and rural cancer centres participated (N = 36). We identified four themes. First, there was a mismatch of expectations around cost conversations. HP expressed concerns about potentially introducing financial‐related distress and did not know specific cost information, while patients emphasised the need for cost discussions with HP. One shared, “I'm kind of… removed from the financial aspect, which is good ‘cause then I can just focus on taking care of patients.” In contrast, one patient said, “…It's not acceptable to just have your hands up and say I don't know… a patient needs to know.” Second, preferences for timing of cost conversations varied, with a need for both immediate and subsequent conversations per patient readiness. One patient shared, “I would have loved to speak with someone about the cost, but I was more concerned about my survival…”. Third, there were multiple usability considerations, including technological demands, health literacy, and the perceived relevance of the tool. Fourth, context‐specific delivery is critical to ensure access.
Discussion
This user‐centred content, usability, and implementation focused adaptation of the CARE Tool incorporated perspectives from patients, HP, and end‐users. Next steps will evaluate the CARE Tool in a clinical trial, assessing financial hardships, self‐efficacy, health insurance literacy, and implementation.
Patient and Public Contribution
This research teams includes a patient advocate and our research question, design, data collection, and interpretation of results was presented for feedback to our community advisory board, made up of patient and public research partners. We recruited patients and healthcare personnel to participate in this study. We greatly appreciate the time, perspective, and experience that our patient and community research partners and participants have contributed to this study.