In this study of U.S. cancer survivors using HINTS-SEER 2021 data, we found that survivors’ sociodemographic and clinical characteristics strongly influenced both general and digital cancer information-seeking behaviors. Overall, 78% of participants had sought cancer-related information from any source, and 74% reported using digital tools (e.g., computers or smartphones) for health or medical information. Information-seeking was significantly more common among younger, female, higher-educated, and higher-income survivors, and less common among those who were older, widowed, or diagnosed with advanced-stage disease. Survivors reporting cancer- or treatment-related symptoms such as nausea or neuropathy were also more likely to seek information, suggesting that ongoing symptom burden may motivate information-seeking during survivorship.

These findings align with and extend prior national research. Davis et al. [15] found that 89% of survivors sought cancer-related information from any source and that 37% used the Internet specifically to look for cancer-related information. The similarity in “first source” patterns (22% of survivors in Davis et al. and 23% in our study identifying the Internet as their initial source) supports the stability of these trends across time. The apparent differences between studies reflect variation in question framing: our study assessed the use of any digital device to obtain health or medical information, while Davis et al. focused solely on cancer-related Internet use. Together, these data indicate that most survivors actively seek information but vary in how they do so, reflecting a persistent digital divide influenced by age, education, income, and health status.

We observed that younger age, female sex, higher educational attainment, and greater household income were strongly associated with seeking cancer information. Survivors who were widowed, older (especially age 75 +), or male were significantly less likely to seek information. These findings are consistent with previous research by Rutten et al. (2016), who documented similar patterns over a decade of HINTS data, showing that older age, lower education, and lower income were consistently linked to lower tendency for information-seeking behaviors from any source [7]. Our study builds on that work by evaluating patterns among cancer survivors included in three SEER cancer registries and identifying that widowed status and advanced-stage diagnosis were additional barriers to information-seeking in survivorship.

Among cancer survivors, digital information-seeking was significantly more common among those with higher educational attainment and income. Survivors with a post-graduate education were over seven times as likely (OR: 7.20, 95% CI: 4.01–12.94) to use electronic tools for health information than those with a high school education or less. Likewise, those with higher income levels demonstrated significantly greater odds of digital engagement. These findings align with Melhem et al. (2023), who found that higher education, income, and employment status independently predicted digital literacy and eHealth engagement among cancer survivors [28]. Our results reinforce that educational and financial resources are enablers of digital information access, contributing to the digital divide (i.e., the gap between individuals or groups who have access to and can effectively use digital technologies and those who cannot).

Conversely, older adults and widowed survivors were significantly less likely to use digital tools to access cancer-related information. This is consistent with both Rutten et al. and Melhem et al., who reported that age and social support influence access to digital resources and confidence and motivation to use them effectively [7, 28]. The digital divide thus reflects not only differences in technology access, but also in skills, trust, and usage patterns among survivors. Conversely, Davis et al. reported time since diagnosis as the only significant predictor of internet use for cancer-related information. This discrepancy may reflect the differences in datasets: HINTS-SEER links HINTS survey responses with clinical characteristics provided by central cancer registries in SEER, in contrast to Davis et al., who relied on self-reported cancer history, potentially underestimating clinical predictors.

Survivors diagnosed with regional or distant stage disease were significantly less likely to use electronic means to seek health information. This finding aligns with prior research showing that poorer health status, greater symptom burden, and advanced cancer stage are linked to lower engagement in online or general information-seeking behaviors [10, 11, 29]. Individuals with advanced disease often experience physical and cognitive fatigue, anxiety, or treatment intensity that limit their motivation or ability to search for information [29]. The abundance of online health information can also be overwhelming or distressing, further discouraging active seeking. Additionally, selection bias cannot be ruled out, as survivors with advanced disease may have been underrepresented in HINTS-SEER due to illness severity or non-response to mailed surveys. Together, these findings underscore the need for tailored, low-burden communication approaches and proactive clinician engagement to ensure that information needs are met even among those with poorer health or advanced disease.

Beyond sociodemographic patterns, we found that survivors who reported treatment-related nausea and neuropathy were more likely to seek cancer-related information. This suggests that survivors managing ongoing or late-emerging symptoms may turn to external sources to support symptom self-management. Jenkins et al. (2001) highlighted that most survivors, regardless of age, desire comprehensive information about side effects and symptom management [17], reflecting a persistent demand for detailed guidance throughout the cancer care continuum. Rutten et al. (2016) similarly reported that information-seeking among survivors often centers on managing long-term treatment effects, especially in the absence of regular provider contact [7]. The differing symptom associations across models (neuropathy for general information-seeking and nausea for digital information-seeking) may reflect small subgroup sample sizes and wide confidence intervals rather than meaningful behavioral differences.

A key finding of this study is the contrast between survivors who first turned to a health care provider’ versus the internet as their first source for cancer-related information. Overall, 58.4% of survivors identified their health care provider as their first source of cancer information, whereas 23.3% reported the internet as their primary source. As shown in Online Resource 1, a higher proportion of older, less educated, and lower-income survivors identified their health care provider as their initial source, whereas relatively higher proportions of younger, higher-educated, and higher-income survivors reported using the internet as their first source. These results align with national trends, showing that although trust in healthcare professionals remains high, survivors’ reliance on healthcare providers versus online sources varies with age, education, income, and digital literacy, patterns also linked to differences in access and confidence [7, 21]. Given the complexity of cancer care and related treatment information, as well as the rapid evolution of digital technology that allows survivors to search and access vast amounts of information, limited clinical time may further encourage survivors’ use of online resources to supplement, rather than replace, communication with healthcare providers. Strengthening provider-initiated referrals to credible, evidence-based digital content could help balance the personalization of clinical guidance with the scalability of digital education, thereby improving patient activation and informed self-management. Similarly, Davis et al. (2021) found that many survivors continue to seek cancer-related information well into survivorship to address unresolved questions and evolving health concerns [15]. Melhem et al. (2023) emphasized that effective digital engagement depends heavily on survivors’ digital literacy and access[28], factors that influence their ability to manage symptom burden through independent information-seeking.

Despite these high rates of information-seeking and growing use of digital tools, a disconnect remains between survivors’ preferred and available information sources. While most survivors in our sample identified their healthcare provider as the first source they would turn to for cancer-related information, the increasing reliance on online tools reflects both necessity and opportunity. Rutten et al. (2016) reported that while healthcare providers remained the most frequently used and trusted first source of cancer information (rising from 19.6% in 2003 to 44.4% in 2008), use of the internet remained relatively stable, reflecting the enduring and evolving dual role of clinicians and digital platforms in survivorship communication. However, not all survivors are equally equipped to navigate digital tools, particularly those facing literacy, access, or confidence barriers; highlighting the need for equity-focused strategies that ensure all survivors can obtain reliable information in formats they trust.

Taken together, our findings support a growing body of literature indicating that information-seeking among cancer survivors is shaped by a complex interplay of sociodemographic and clinical factors. Survivors with fewer resources (i.e., economic, educational, or social) face systemic barriers to accessing information critical to informed decision-making. Addressing these gaps will require proactive, equity-centered approaches that extend digital literacy support, offer plain-language resources, and bridge the divide between clinical and digital care channels.

Our findings underscore the importance of understanding why certain subgroups, particularly survivors with advanced-stage disease, lower income, or limited digital access, are less likely to seek health information online. Beyond barriers of access, factors such as perceived reliability of online content, trust in healthcare providers, and emotional or cognitive burden may strongly influence engagement [29,30,31]. These findings suggest that low information-seeking among these groups may reflect not only resource limitations but also psychological and informational fatigue. Large-scale reviews have noted that few digital health interventions are designed for older adults or advanced-stage patients, populations facing the greatest unmet informational needs [32]. Pilot psychoeducational programs like ENCOURAGE demonstrated selective benefits among distressed survivors but limited overall efficacy [33], reinforcing that such digital approaches remain exploratory. Likewise, early eHealth systems such as CHESS illustrated the potential of technology to enhance information access and support [34], but modern interventions must now address contemporary barriers of trust, reliability, and digital literacy. Moving forward, mixed-methods and longitudinal research should clarify the cognitive, emotional, and contextual factors that influence survivors’ engagement with digital health information, strengthening the evidence base needed to develop accessible, evidence-informed digital communication strategies that enhance survivorship care across diverse populations. Insights from such work can guide the creation of adaptive, theory-driven digital interventions that evolve with survivors’ changing informational needs and bridge the gap between clinical communication and self-directed information-seeking.

This study’s use of HINTS-SEER 2021 data enabled a more clinically precise understanding of survivors’ information behaviors by linking cancer characteristics included in SEER (e.g., site, stage at diagnosis, treatment history) with behavioral survey data. Compared to previous HINTS datasets, this provides a stronger foundation for understanding how clinical and sociodemographic variables interact to shape health information-seeking patterns.

This study is limited by its cross-sectional design, preventing causal inference. The relatively low sample size (N = 1,234) and response rate (12.6%) may also introduce selection bias, potentially overrepresenting more engaged or health-literate survivors. Underserved cancer survivors may be underrepresented in this sample to the extent that underserved survivors may be less likely to have participated; as a result, the findings reported here may not be generalizable to all cancer survivors. Further, the survey’s mailed paper-based format may have under-sampled survivors who face literacy or accessibility barriers. Additionally, the ‘Other’ cancer site category encompasses a heterogeneous mix of cancers (e.g., lung, melanoma, hematologic, gynecologic) because SEER-linked site codes were aggregated to minimize disclosure risk in the publicly available dataset. This restriction limited our ability to analyze site-specific variations in information-seeking behaviors. Finally, while our data provide valuable insight into who is and isn’t seeking information, we did not assess the quality, effectiveness, or comprehension of the information obtained, which are critical factors highlighted by Davis et al. [15].