Cancer Information Burden and Mental Health Among U.S. Cancer Caregivers: Evidence from the Health Information National Trends Survey

Background: Family and unpaid caregivers play an essential role in supporting individuals with cancer and frequently navigate complex health information related to treatment, symptoms, supportive care, and healthcare services. Difficulty obtaining, understanding, and evaluating cancer information may contribute to psychological distress among caregivers. However, nationally representative evidence examining the association between cancer information burden and caregiver psychological well-being remains limited. Objective: This study examined the association between cancer information burden and psychological distress among U.S. adults who reported providing care to an individual with cancer. Methods: We conducted a cross-sectional analysis of pooled data from the National Cancer Institute’s Health Information National Trends Survey (HINTS) Cycles 6 and 7. Cancer caregivers were identified based on respondents reporting caregiving for an individual with cancer. Cancer information burden was measured using four items assessing the effort required to obtain cancer information, difficulty understanding cancer information, frustration during cancer information seeking, and concern about information quality. Item responses were averaged to create a composite cancer information burden score, with higher scores indicating greater burden. Psychological distress was measured using the Patient Health Questionnaire-4 (PHQ-4), a validated 4-item measure of depressive and anxiety symptoms ranging from 0 to 12. Survey-weighted linear regression examined the association between cancer information burden and PHQ-4 scores while accounting for the complex survey design. Adjusted models included age, sex, race and ethnicity, education, and household income. Results: We identified 241 respondents as cancer caregivers, with 124 included in the fully adjusted complete-case analysis. In the common analytic sample, higher cancer information burden was associated with greater psychological distress in unadjusted analysis (β=1.57, 95% CI 0.17-2.98; p=.028). After adjustment for age, sex, race and ethnicity, education, and household income, the association remained statistically significant (β=0.89, 95% CI 0.03-1.75; p=.042). Older age was associated with lower psychological distress in the fully adjusted model (β=-0.06, 95% CI -0.11 to -0.01; p=.013). Several education and income categories were also associated with psychological distress. Diagnostic analyses supported an approximately linear relationship between information burden and PHQ-4 scores, although heteroskedasticity was present. Conclusions: Greater cancer information burden was associated with higher psychological distress among U.S. cancer caregivers. These findings suggest that caregiver well-being may be influenced not only by access to cancer information but also by the effort, complexity, frustration, and uncertainty involved in navigating that information. Interventions and digital health resources designed for cancer caregivers should therefore consider strategies to reduce information burden and improve caregivers' ability to identify, understand, and evaluate cancer-related information.