Identifying missing links in the conceptualization of financial toxicity: a qualitative study

Purpose: Financial toxicity can have a major impact on the quality of life of cancer survivors but lacks conceptual clarity and understanding of the interrelationships of the various aspects that constitute financial toxicity. This study aims to extract major drivers and mediators along the pathway from cancer-related costs to subjective financial distress from the patients’ experiences to establish a better understanding of financial toxicity as a patient-reported outcome. Methods: Qualitative semistructured interviews with 39 cancer patients were conducted in Germany and addressed patient experiences with cancer-related financial burden and distress in a country with a statutory health care system. Transcripts were analyzed using content analysis. Results: Several aspects of financial burden need to be considered to understand financial toxicity. The assessment of the ability to make ends meet now or in the future and the subjective evaluation of financial adjustments—namely, the burden of applied financial adjustments and the availability of financial adjustment options—mediate the connection between higher costs and subjective financial distress. Moreover, bureaucracy can influence financial distress through a feeling of helplessness during interactions with authorities because of high effort, non-traceable decisions, or one’s own lack of knowledge. Conclusion: We identified four factors that mediate the impact of higher costs on financial distress that should be addressed in further studies and targeted by changes in policies and support measures. Financial toxicity is more complex than previously thought and should be conceptualized and understood more comprehensively in measurements, including the subjective assessment of available adjustment options and perceived burden of financial adjustments.