JMIR Publications

ABSTRACT

Background:

Background:

Cancer survivors must navigate increasingly complex information environments that can involve substantial effort, frustration, difficulty understanding cancer-related information, and concern about information quality. These experiences may contribute to psychosocial strain, including perceived social isolation, yet nationally representative evidence on this relationship remains limited.

Objective:

Objective:

This study examined the association between cancer information burden and perceived social isolation among U.S. cancer survivors using pooled Health Information National Trends Survey (HINTS) 2022 and 2024 data.

Methods:

Methods:

We analyzed cross-sectional, nationally representative data from 1,972 adults who reported a previous cancer diagnosis. Cancer information burden was measured using four HINTS items assessing perceived effort in obtaining cancer information, difficulty understanding cancer information, frustration during information seeking, and concern about information quality. A composite score ranging from 0 to 3 was calculated for respondents with valid responses to all four items, with higher scores indicating greater burden. Perceived social isolation was measured using the PROMIS Social Isolation T-score. Survey-weighted linear regression models estimated associations between cancer information burden and social isolation while accounting for the complex HINTS sampling design. The fully adjusted model included age, sex, race and ethnicity, educational attainment, household income, U.S. Census division, and survey cycle. The final complete-case analytic sample included 929 respondents.

Results:

Results:

The weighted mean cancer information burden score was 1.22 [95% CI 1.16, 1.29], and the weighted mean PROMIS Social Isolation T-score was 45.09 [44.44, 45.75]. Greater cancer information burden was associated with higher perceived social isolation in the unadjusted model (β=2.34 [1.23, 3.45], p<0.001), the demographic-adjusted model (β=2.02 [0.97, 3.08], p<0.001), and the fully adjusted model (β=1.83 [0.80, 2.86], p=0.001). Difficulty understanding cancer information, frustration during information seeking, and concern about information quality were each independently associated with higher social isolation scores, whereas perceived effort alone was not statistically significant. The association between cancer information burden and social isolation did not differ significantly by survey cycle or age. Results were consistent in sensitivity analyses adjusting for diagnosed depression and PHQ-2 depressive symptom scores.

Conclusions:

Conclusions:

Greater cancer information burden was associated with higher perceived social isolation among U.S. cancer survivors. The persistence of this association after adjustment for demographic, socioeconomic, and depressive symptom measures suggests that difficulties navigating cancer information may represent an important psychosocial concern in survivorship. Interventions that improve the clarity, accessibility, and credibility of cancer information may help reduce information-related strain and support more socially connected survivorship experiences. Implications for Cancer Survivors: Cancer survivors may benefit from clear, credible, and easy-to-navigate information, together with opportunities for clinical and psychosocial support, to reduce information-related strain and perceived social isolation.