Abstract
IMPORTANCE: Patients with head and neck cancer (HNC) are disproportionately affected by financial toxicity (FT). Most research has evaluated FT at a single point. OBJECTIVE: To evaluate longitudinal factors associated with FT and health-related quality of life in patients and caregivers to understand its progression and effect. DESIGN, SETTING, AND PARTICIPANTS: This prospective cohort study was conducted at a single tertiary care center from October 2018 to December 2020. Data were analyzed from December 2020 to December 2024. Eligible participants included adult patients with HNC undergoing definitive treatment and their primary caregivers. EXPOSURES: Surveys conducted at diagnosis, 3 months, and 6 months postdiagnosis. Instruments included the Comprehensive Score for Financial Toxicity, version 1, Financial Distress Questionnaire, University of Washington Quality of Life Scale (UWQOL), version 4 (with physical [PQOL] and social [SQOL] subscales), 19-Item Social Support Survey, and Three-Item Loneliness Scale. Semistructured qualitative interviews were performed at 6 months. MAIN OUTCOMES AND MEASURES: Linear mixed-effects modeling assessed trends in FT (Comprehensive Score for Financial Toxicity), PQOL, and SQOL longitudinally. The McNemar tests compared Financial Distress Questionnaire score among dyads. Qualitative interviews were analyzed using a conventional content analysis. RESULTS: Of 74 enrolled patients (median [range] age, 60 [32-81] years; 12 female individuals [19%]), 64 (86%) completed at least 1 survey, and 41 (64%) participated in interviews. Patients and caregivers reported similar support and loneliness. FT decreased over time (β = 2.77; 95% CI, 1.60-4.33) and older age (β = 0.37; 95% CI, 0.05-0.68) and higher education (β = 13.43; 95% CI, 7.76-18.43) were associated with lower FT, while not working (β = -6.77; 95% CI, -10.31 to -2.96) was associated with worse FT over time. Mixed-effects logistic modeling showed similar odds of high FT over time for patients and caregivers (odds ratio, 1.66; 95% CI, 0.11-273.14). PQOL declined, while SQOL improved longitudinally. Insurance type was the only sociodemographic variable associated with health-related quality of life at diagnosis. Qualitative findings highlighted gaps in treatment expectations, lack of preparedness for financial demands, and the association of FT with employment and caregiving. CONCLUSIONS AND RELEVANCE: The results of this cohort study suggest that age, education level, and employment are associated with FT and its progression. FT is dynamically associated with PQOL and SQOL over time. These findings highlight treatment expectations as a theme contributing to unpreparedness for FT. Interventions to manage physical symptoms, return patients and caregivers to work, and alleviate lower educational attainment and mismatched expectations may serve as mitigation strategies for FT.