The gift that keeps giving you gifts you don't want: Mixed methods analysis of financial toxicity in cutaneous T-cell lymphoma.

Abstract

e23139 Background: Cutaneous T-cell lymphoma (CTCL) is treated with multimodal therapy with frequent healthcare visits and high out-of-pocket (OOP) costs. Patients with CTCL may experience significant financial toxicity which is not well-characterized. We conducted a mixed methods study to understand drivers of financial toxicity and develop mitigation strategies for patients with this rare malignancy. Methods: In 2024, we interviewed 20 patients with CTCL currently receiving therapy at University of Washington/Fred Hutchinson Cancer Center. All patients completed a survey that included an OOP cost diary over the last 30 days, FACIT-COST, a debt assessment, PHQ-4, and the NCCN Distress Thermometer (NCCN-DT). This was followed by a 60-minute semi-structured interview which explored the drivers of and strategies to address financial toxicity. The interview guide was developed using existing conceptual frameworks of financial toxicity. The survey was analyzed using nonparametric tests. The interviews were transcribed, individually coded by 3 blinded researchers, and analyzed using deductive and inductive thematic analysis. Results: Patients were 59.5 years (median; range: 34-87), 60% male, 65% white, 55% publicly insured, 65% married, and 55% employed. Median FACIT-COST was 25.5 (2-43), median OOP cost in the last 30 days was $97.50 ($0-$1680), and 55% modified their CTCL care due to cost. 50% had unsecured debt (e.g., credit card, medical debt, personal loans); among these, 70% had increased debt after CTCL diagnosis, 80% worry about debt, and 60% want professional help with debt. Median PHQ-4 was 1 (0-12); median NCCN-DT was 2.5 (0-8). Patients with higher financial toxicity by FACIT-COST were more likely to modify care due to cost (p < 0.001), have unsecured debt (p < 0.001), have higher anxiety and depression by PHQ-4 (p = 0.08), and have higher distress by NCCN-DT (p = 0.04). Transcript analysis yielded quotes in 8 prespecified themes and 3 new themes (delay in diagnosis, “luck paradox,” skin and physical appearance). Multilevel suggestions to address financial toxicity at the cancer center, insurance company, and public policy levels were elicited. The Table shows the 8 prespecified themes along with the data integration approach. Conclusions: Patients with CTCL experience significant financial toxicity; they should be screened at regular intervals and offered comprehensive patient navigation. Prespecified Financial Toxicity Themes Data Integration OOP costs of drugs and medical visits Cost diary, FACIT-COST OOP costs of other aspects of CTCL care Cost diary, FACIT-COST Wealth changes, liabilities, and housing Debt assessment Insurance coverage Insurance data Employment Employment data Indirect costs ("time toxicity") Travel distance from home to cancer center Mental health PHQ-4, NCCN-DT Coping behaviors Question #4 (care modification due to cost), FACIT-COST