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. Author manuscript; available in PMC: 2022 Dec 1.
Published in final edited form as: J Cancer Educ. 2021 Dec;36(6):1253–1260. doi: 10.1007/s13187-020-01758-6

Correlates of Information Seeking Behaviors and Experiences Among Adult Cancer Survivors in the United States

Stacy N Davis 1,2,3, Denalee M O’Malley 1,3,4, Alicja Bator 1,4, Pamela Ohman-Strickland 1,2,3, Shawna V Hudson 1,2,3,4
PMCID: PMC7606325  NIHMSID: NIHMS1590239  PMID: 32358717

Abstract

Purpose:

Understanding information seeking behaviors and experiences are essential for designing educational and supportive interventions to promote survivor’s self-management post treatment. This study examined health and cancer information seeking, use of internet to find cancer information, and information seeking experiences among breast, colorectal, and prostate cancer survivors.

Methods:

Nationally representative data collected in 2017–2018 from two cycles of the Health Information National Trends Survey (HINTS 5, Cycle 1 and 2 were merged with combined replicate weights using the jackknife replication method (n=373). Regression analysis for three information seeking behaviors (i.e., health information, cancer information, and internet for cancer information) were modeled, including sociodemographic and clinical factors as predictors. In addition, separate regression analysis predicted three experiences of information seeking (effort, quality, and hard to understand) with sociodemographic and clinical factors.

Results:

A majority of survivors (84.7%) sought health information. Factors significantly associated with seeking health information were gender(p=0.024), education(p=0.0021), and income(p=0.018). Only 38% of survivors used the internet to seek cancer-related information. The only factor significantly associated with using the internet to seek cancer-related information was time since diagnosis (p=0.0002). Factor significantly associated with difficulty understanding information was annual household income (p=0.026).

Conclusions:

This study fills an important gap by identifying sociodemographic and cancer related factors associated with information seeking behaviors and experiences. These findings highlight a need to tailor information for low socioeconomic status survivors to account for the lack of skills, resources, and motivation to seek information about health and cancer related topics independently.

Keywords: cancer survivors, cancer, cancer survivorship, information-seeking, cancer information

Introduction

Survivors of breast, colorectal, and prostate represent approximately one third of the 16.9 million cancer survivors in the United States[1, 2]. The information needs of cancer survivors differ from those of the general population, due to the late and long-term health and psychosocial issues that result from cancer and its treatments[3]. Survivors’ information needs vary over the course of their survivorship trajectory, with the highest need reported during the diagnosis and treatment phases[35]. During this time, many survivors want and need information to further understand their diagnosis and prognosis, treatment options and side effects, and long-term treatment plan[3, 5]. Post-treatment informational needs shift to self-management of physical and psychosocial symptoms, resources for coping, handling potential recurrence and surveillance, as well as addressing potential long-term lifestyle and financial toxicity effects of their cancer[3, 5, 6]. In addition, cancer survivors are managing their diagnosis of cancer and its sequelae alongside other chronic conditions with reduced engagement and reliance on their cancer treatment team that require information and input to appropriately manage their multiple chronic conditions[1, 7].

Many survivors, regardless of their phase within the survivorship trajectory, report unmet information needs[3, 4, 6, 810]. Unmet information needs are associated with decreased trust in healthcare providers, decreased satisfaction with healthcare, and lower health-related quality of life[4]. Studies suggests that unmet information needs adversely affect survivor’s treatment adherence, medical decision-making, coping, communication with providers and caregivers and self-management[3, 9]. Thus, it is critical survivors receive high-quality and comprehensive information that is understandable and in preferred, accessible modalities [1, 3, 8, 9].

Opportunities for survivors to obtain health and cancer-related information to support their information needs are greater than ever through diverse information channels[10, 11]. Accessible, high-quality and comprehensive cancer-related information is associated with overall health-related quality of life and better psychosocial health outcomes [9]. Survivors’ preferred source to obtain information is their health care provider [3, 10, 12]. However, survivor’s perceived lack of ability to obtain information from their healthcare providers is driving their use of the internet as a channel for acquiring health and cancer-related information[11, 1315]. Cancer survivors often struggle in selecting, evaluating, and assessing the credibility of online information sources [1517]. Survivors that describe their information seeking experiences, regardless of source, as requiring too much effort to obtain information, information is of a reduced quality, or hard to understand has the potential to influence behavioral and psychological outcomes[3, 17]. Exploring survivor’s information seeking experience and sociodemographic factors that may influence information seeking experience and quality of the information once found is vitally important to ensuring survivor’s information needs are adequately met.

Within the context of evolving health informational outlets, cancers survivor’s health information seeking behaviors must continually be evaluated to develop and target strategies to help survivors manage their care. This study examined the frequency of health and cancer-related information seeking and sociodemographic factors associated with the use of the internet to find cancer information, and information seeking experiences and among adult cancer survivors in the United States.

METHODS

Survey design and sample

The Health Information National Trends Survey (HINTS) is a biennial, nationally representative, cross-sectional mailed survey funded by the National Cancer Institute. HINTS is designed to assess the impact of the health information environment within the United States. Specifically, how people currently access and use health information, how people use information technology to manage health and health information, and the degree people are engaged in healthy behaviors[18]. HINTS contains several survey items specific to the cancer care continuum (e.g., cancer prevention, early detection, diagnosis, treatment, and survivorship)[18]. Data from round 1 and 2 of the current version of the HINTS survey: HINTS 5, Cycle 1 (fielded January–May, 2017, response rate 32.4%) and HINTS 5, Cycle 2 (fielded January–May, 2018, response rate 32.9%) was combined. Additional information on the sampling design and other methodological details are described on the HINTS website (https://hints.cancer.gov/data/survey-instruments.aspx). The analysis was restricted to cancer survivors who reported a personal history of breast, colorectal, or prostate cancer. These three cancer types were chosen because they are the most common cancers sites represented by the survivor population in the US, are associated with treatment related morbidity that co-occurs alongside other chronic conditions, and probability of dying from other causes have been shown to vary by these cancer types[19].

Measures

Information Seeking Behaviors

Seeking Health Related Information. In each survey cycle, respondents were asked “Have you ever looked for information about health or medical topics from any source?” (yes or no). Seeking Cancer Related Information. In both cycles, respondents were asked “Have you ever looked for information about cancer from any source?” (yes or no). Used Internet to Seek Cancer Information. In each survey cycle, respondents were asked “In the past 12 months, have you used the internet to look for information about cancer for yourself?” (yes or no). First source of information. In both cycles, respondents were asked “Imagine that you had a strong need to get information, where would you go first?” Respondents could select one of the following: health care provider, Internet, print media, family/friends/coworkers, and cancer organizations.

Information Seeking Experiences

In both survey cycles, respondents were asked to rate their subjective experiences for their most recent searches for medical and health information. The statements were: (1) “It took a lot of effort to get the information you needed”; (2) “You were concerned about the quality of the information”; and (3) “The information you found was hard to understand”. The three items were scored on a four-point response scale ranging from strongly agree to strongly disagree, and collapsed into a dichotomous variable agree vs disagree.

Sociodemographic Characteristics

Sociodemographic characteristics assessed included age, gender (male or female), race/ethnicity, education level, marital status, employment status, annual household income, and health insurance. Race was coded as non-Hispanic White, non-Hispanic Black, Hispanic/Latino, and other. Educational level was coded as less than a high school diploma, high school graduate to some college, and college graduate and higher. Marital status was condensed into a dichotomous variable married or living with partner versus not married (i.e., divorced, widowed, separated, and single). Employment status was coded as employed, retired, or other. Annual household income was coded as a dichotomous variable $49,999 or less versus $50,000 or higher. The dichotomous variable for health insurance status is insured vs. not insured.

Clinical variables include comorbidity burden, time since cancer diagnosis, and cancer type. For comorbidities, respondents self-reported ever being told if they had each of the following conditions: diabetes or high blood sugar, hypertension or high blood pressure, a heart condition, chronic lung disease, or arthritis or rheumatism. Time since cancer diagnosis is based on when survivors were diagnosed with cancer and age when completed the HINTS survey. For analysis, this variable is coded <1-year post-diagnosis, 2–5 years post-diagnosis, 6–10 years post-diagnosis; and, 11+ years post-diagnosis. Survivors self-reported a personal history of breast, colorectal, or prostate cancer. Survivors were excluded if they were still in active treatment, defined as still receiving chemotherapy, radiation, and/or surgery for their cancer.

Data Analysis

Statistical analyses were conducted using SAS software (version 9.4, SAS Institute Inc., Cary, NC). The two HINTS datasets were merged into a stacked dataset. HINTS supplied survey weights, derived using jackknife variance estimation technique, were used in inferential analyses to account for the complex HINTS sampling design and to calculate nationally representative estimates[18]. This study examined the frequency of health and cancer-related information seeking, use of the internet to find cancer information, and the information seeking experience among breast, colorectal, and prostate cancer survivors. Frequencies for sociodemographic variables were calculated. Chi-square analysis assessed the association between sociodemographic factors and information seeking behavior and experiences. Weighted jackknife logistic regression models were used to evaluate the association between sociodemographic factors and outcome variables; health and cancer-related information seeking, using the internet to find cancer information, and information seeking experiences. Predictors found to be significant in bivariate models with p < 0.05 were entered into a multivariable logistic regression model.

RESULTS

Sociodemographic characteristics are summarized in Table 1. Most participants were breast cancer survivors (n=194,51.64%), with a smaller proportion of prostate (n=116; 26.66%), and colorectal survivors (n=63; 21.70%). Most survivors were at least 65 or older (64.39%), female (61.20%), non-Hispanic White (76.21%), and married or living with partner (72.25%). Two-thirds of the sample had a high school diploma or some college (65.35%), were retired (59.24%), and reported an annual household income greater than $50,000 (54.77%). Almost all survivors (96.34%) had health insurance coverage. Most survivors were at least six years post cancer diagnosis (64.5%). Sociodemographic characteristics were found to differ by cancer type. Survivors were significantly different in age (p<0.05), race/ethnicity (p<0.0001), and employment status (p<0.0001).

Table 1.

Weighted sample sociodemographic characteristics of survivors

Variable Level n (%)
Age Less than 64 104 (35.61)
Greater than 65 258 (64.39)

Gender Male 138 (38.80)
Female 233 (61.20)

Race/Ethnicity Non-Hispanic White 230 (76.21)
Non-Hispanic Black 50 (10.94)
Hispanic 25 (5.97)
Other 18 (6.89)

Education level Less than high school diploma 21 (5.56)
High school diploma to some college 207 (65.35)
College grad or higher 137 (29.09)

Marital status Married 261 (72.25)
Not Married 104 (27.75)

Employment status Employed 83 (25.00)
Retired 230 (59.24)
Other 41 (15.76)

Annual household income $49,999 or less 169 (45.23)
$ 50,000 or greater 152 (54.77)

Health Insurance Yes 352 (96.34)
No 10 (3.66)

Number of comorbidities 0 60 (18.21)
1 100 (28.95)
2 98 (26.53)
3–6 115 (26.31)

Cancer Type Breast 194 (51.64)
Colorectal 63 (21.70)
Prostate 116 (26.66)

Time Since Diagnosis Less than 1 yr 42 (13.22)
2 – 5 years 79 (22.33)
6–10 years 77 (23.86)
More than 10 yr 158 (40.59)

Seeking Health Related Information

Most survivors (84.7%) sought health information from any source. In bivariate analysis, seeking health information was significantly associated with gender (p<0.05), education level (p<0.0001), and annual household income (p<0.0001). Seeking health information was higher among cancer survivors who were female, had a high school diploma or some college, and had an annual household income greater than $50,000. Seeking health information was not associated with any clinical factors (e.g., cancer type, time since diagnosis, comorbidity burden). A regression analysis was performed to assess the relationship of significant sociodemographic factors (gender, education, and annual household income) on seeking health information from any source among cancer survivors. Table 2 presents the results from the logistic regression models. The full model for seeking health information was statistically significant, χ2(4) = 28.40, p < 0.0001, gender, education level, and annual household income made unique statistically significant contribution to the model. Female survivors, compared to male survivors, were 2 more likely (OR=2.87, p=0.024) to seek health information from any source. Survivors whose income is $50,000 or greater were more likely (OR=7.02, p=0.018) to seek health information from any source compared to survivors with less annual household income. Survivors with less than a high school degree were less likely (OR=0.07, p=0.0021) compared to college educated survivors to seek health information from any source.

Table 2.

Logistic regression models between sociodemographics and information seeking behaviors

Variable Level OR (95% CI) Type 3 p-value
Looked for information about health/medical topics

Gender Male 1.00 0.024
Female 2.87 (1.15, 7.16)

Education level Less than high school diploma 0.07 (0.01, 0.36) 0.0021
High school diploma to some college 0.76 (0.21, 2.72)
College grad or higher 1.00

Annual household income $49,999 or less 1.00 0.018
$ 50,000 or greater 7.02 (1.39, 34.45)

Looked for information about cancer from any source

Age Less than 64 1.00 0.88
Greater than 65 1.16 (0.17, 8.17)

Education level Less than high school diploma 0.80 (0.048, 13.43) 0.73
High school diploma to some college 0.63 (0.18, 2.20)
College grad or higher 1.00

Employment status Employed 4.73 (0.65, 34.31) 0.30
Retired 1.00
Other 3.50 (0.21, 57.76)

Annual household income $49,999 or less 1.00 0.21
$ 50,000 or greater 2.21 (0.63, 7.75)

Time Since Diagnosis Less than 1 yr 2.51 (0.04, 165.19) 0.46
2 – 5 years 2.75 (0.70, 10.89)
6–10 years 1.73 (0.68, 4.39)
More than 10 yr 1.00

Used internet to find cancer info for yourself

Annual household income $49,999 or less 1.00 0.17
$ 50,000 or greater 1.80 (0.78, 4.17)

Time Since Diagnosis Less than 1 yr 8.58 (2.82, 26.102) .0002
2 – 5 years 2.08 (0.79, 5.45)
6–10 years 0.54 (0.24, 1.22)
More than 10 yr 1.00

CI, confidence interval, OR odds ratio

Seeking Cancer Related Information

Approximately 89% of survivors sought cancer-related information from any source. In bivariate analysis, seeking cancer information was significantly associated with age (p<0.05), education level (p<0.05), employment status (p<0.01), annual household income (p<0.05), and time since diagnosis (p<0.05). Seeking cancer related information was more common among cancer survivors who were 65 years and older, had a high school diploma or some college, were retired, and reported an annual income greater than $50,000, and were 6– 10 years post-cancer diagnosis. Seeking cancer information from any source was not associated with cancer type or comorbidity burden. Table 2 presents the final logistic model estimating the relationship of significant of sociodemographic factors (age, education, employment, income, and time since diagnosis) on seeking cancer information. The full model was significant χ2(9) = 22.67, p=0.007; however, associations found during bivariate analysis did not remain significant.

Used Internet to Seek Cancer Information

Most survivors (66%) reported their health care provider as their first source when they needed health information. For a smaller group (22%) or survivors, the internet was the first source of health information. The first source to obtain health information did not vary by cancer type or time since diagnosis. Only 37.4% of cancer survivors with access to the internet used the internet to seek cancer-related information in the past 12 months. Bivariate factors associated with using the internet to seek cancer information were annual household income (p<.05) and time since diagnosis (p<0.001). Using the internet to seek cancer information was higher among cancer survivors with an annual income greater than $50,000 and 6– 10 years post cancer diagnosis. Using the internet to seek cancer information was not associated with cancer type or comorbidity burden. Table 2 presents the final logistic regression model to assess the relationship of significant sociodemographic factors (annual household income and time since diagnosis) on using the internet to seek cancer information. The full model was statistically significant, χ2(4) = 19.89, p < 0.001. Time since diagnosis was the only factor to make a unique statistically significant contribution to the model. Cancer survivors one-year or less post diagnosis were 9 times more likely (OR=8.58, p=0.0002) to use the internet to seek cancer information in the past 12 months compared to survivors diagnosed over 10 years ago.

Information Seeking Experiences

Survivors were asked their experiences surrounding their most recent search for health information. A third (34%) of survivors agreed with the statement that “it took a lot of effort to get the information needed.” Gender (p<0.05) was associated with the experience of expending a lot of effort to get needed information. Women were more likely to report that their search took a lot of effort. Over a third (39%) of survivors endorsed the statement that they were “concerned about the quality of information found.” Concerns about the quality of information once found was associated with health insurance status (p < 0.05). Survivors with health insurance were more likely to have concerns about the quality of the information.

Less than a quarter (21%) of survivors agreed with the statement “the information found was hard to understand.” In bivariate analysis, information was hard to understand was associated with gender (p < 0.01), employment status (p < 0.05), annual household income (p < 0.05), and race/ethnicity (p < 0.05). More men, retirees, those with an annual household income $49,999 or less, reported that information was hard to understand compared to the respective reference groups. Table 3 presents the final logistic model assessing the relationship of significant sociodemographic factors on information seeking experience. The full model was statistically significant, χ2(7) = 15.55, p =0.030. Income was the only statistically significant factor in the model. Survivors with an income of $50,000 or more were less likely (OR=0.31, p=0.026) to believe the information was hard to understand compared to survivors who earned less.

Table 3.

Logistic regression models between sociodemographics and information seeking experience

Variable Level OR (95% CI) Type 3 p-value
Information found was hard to understand

Gender Male 1.00  0.11
Female 0.46 (0.18, 1.19)

Employment status Employed 1.17 (0.41, 3.33)  0.75
Retired 1.00
Other 1.80 (0.38, 8.53)

Annual household income $49,999 or less 1.00  0.026
$ 50,000 or greater 0.31 (0.11, 0.87)

Race/Ethnicity Non-Hispanic White 1.00  0.24
Non-Hispanic Black 1.85 (0.34, 9.96)
Hispanic 1.63 (0.09, 28.77)
Other 7.57 (0.85, 66.99)

CI, confidence interval, OR odds ratio

Discussion

This study examined factors associated with health and cancer-related information seeking, the use of the internet to seek cancer information, and perceptions about the information seeking experiences of cancer survivors. Most survivors (84%) sought health-related information in the past. The final model identified gender, educational level, and income as factors associated with seeking health-related information from any source. Women were more likely to seek health information compared to men. This is consistent with previous research that gender is a predictor of seeking health information[3, 12]. Conversely, these findings show that men may have higher unmet informational needs and thus may need encouragement to seek and utilize health information. Survivors with higher socioeconomic status (education and income) were more likely to seek health information, consistent with previous published literature[12]. These findings highlight a need to tailor information for low socioeconomic status survivors to account for the lack of skills, resources, and motivation to seek information about health and cancer related topics independently.

This analysis indicates that the proportion of survivors who sought cancer-related information from any source is increasing (80.8% in 2016 to 89.4% in 2018)[14]. However, we did not find sociodemographic or clinical factors to be significantly associated with seeking cancer-related information. Previous studies have found that seeking cancer-related information from any source is related to age, education, gender, race/ethnicity, and income[14, 20]. The lack of associations may be due in part to inconsistent operationalization of cancer-related information seeking in much of the published literature[21]. Additionally, the largest group of survivors in this study were breast cancer survivors who tend to proactively seek information more than those with other cancer types[22].

Approximately one-third (37%) of survivors used the internet to seek cancer information. Similar studies that used HINTS to explore use of the internet to seek cancer information among cancer survivors found age, education, income, and race/ethnicity to be significant factors in multivariable models[11, 14, 20]. In contrast, we found that time since diagnosis was the only factor to remain significantly associated with using the internet to seek cancer information. This finding is consistent with previous literature[23], reinforces cancer survivor’s information needs change throughout their cancer trajectory. The most intense timeframe of information seeking using the internet to find cancer information is immediately following a cancer diagnosis. During this period, cancer survivors are orienting themselves to the cancer diagnosis and use the internet to find cancer information beyond what is provided by their healthcare provider at initial diagnosis regarding their cancer, treatment options and care plans. Longer-term survivors are still using the internet to find cancer-related information, but focus on self-management of their cancer related symptoms[15].

Most survivors did not report a negative information seeking experiences and these findings are consistent with other studies[16]. Findings from this analysis indicate that for specific survivor subgroups, the information seeking experience is unsatisfactory and frustrating. Our final model indicated difficulty understanding health information was associated with income. Older and low-income survivors are more likely to rely on their healthcare provider as their main source of health information and less likely to use other channels to seek information[24]. Thus, they may not be aware of alternative or complimentary sources to obtain reliable, accurate, and low-literacy cancer-related information. These survivors often face challenges related to seeking, accessing, and understanding information which may negatively influence knowledge, attitudes, behaviors, and medical decisions and impede patient-provider communication which may stop these individuals from fully benefiting from advances in healthcare and medicine. Survivors must be aware of informational sources, have the skills to access these sources and understand the content to apply information to their care.

There are several limitations of this research. First, the HINTS data used within this analysis is cross-sectional. These results only provide a snapshot of information seeking behaviors and experiences. Longitudinal examination of information seeking behaviors and experiences would provide additional insight. Second, to reduce participant survey length and respondent burden, single items were used to measure constructs of interest. Therefore, the number of items available for measuring a complex behavior of information seeking, may fail to fully capture the construct. Third, the lack factors associated with outcome variables of interest may be due to the study sample is primarily older, non-Hispanic White breast cancer survivors. Therefore, to the physiological, emotional, cognitive factors such as depression and worry that may influence information seeking behaviors and experiences, and not adequately not captured in HINTS survey, and may have a greater influence on seeking information[8]. Finally, measurement of constructs of interests changed between cycles. Therefore, in this analysis questions not asked in both cycles were excluded. In addition, information seeking behaviors of survivors were separated based on the type of information sought, health vs cancer-related information.

This study fills an important gap in the literature by identifying cancer survivor characteristics associated with specific information seeking behaviors and experiences to inform the development of interventions. Electronic health (eHealth) interventions are increasingly used as a channel to deliver accurate, understandable, and culturally competent information to cancer survivors. eHealth interventions can help to enhance survivors’ interactions with healthcare providers, enhance understanding of post-treatment care, address unmet psychosocial needs and positively affect health[25]. Yet, it is important to consider that these strategies rely on skills and motivation of cancer survivors to seek and use information that are not consistent with our findings. eHealth interventions, such as a website that includes relevant information, contacts for health providers, and calendar reminders for appointments, are a potential solution as a reliable destination for reliable, accurate, and easy to understand cancer-related information[26]. This study also addresses the important gap of survivor’s experiences of the information seeking experiences and whether they find the information understandable. Relatively few studies have investigated predictors of experiences during information seeking.

Recently, the need for survivors to self-manage the late and long-term effects of cancer and its treatment given their surging numbers has been more widely acknowledged. Most of the survivors in this sample are longer-term survivors. For these survivors, further out from diagnosis and treatment there is less contact with their oncology team, but they still require cancer-related information. Thus, relevant information is needed in the oncology setting, but information that is both specific and generalizable are also needed in primary care settings. As with any self-management of a chronic health issue, survivors who have the skills and ability to actively participate in decision making and disease management will fare better than those who do not. Health information seeking and use of the internet to access cancer information significantly differs based on sociodemographic factors, primarily higher income and time since cancer diagnosis. Future research is needed to develop tailored strategies to identify survivors and provide resources, support and educational to optimize survivorship care.

Acknowledgements:

Supported (in part) by the New Jersey Alliance for Clinical and Translational Science. Research reported in this publication was supported by the National Center for Advancing Translational Sciences (NCATS), a component of the National Institute of Health (NIH) under Award Number UL1TR0030117. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Funding: Dr. Davis’ effort is supported by a diversity supplement granted by the National Cancer Institute (3R01CA176838-04S1 Hudson PI). Drs. Hudson, O’Malley and Ms. Bator effort is supported by the National Cancer Institute of the National Institutes for Health under award number R01CA176838 (Hudson SV (PI) and the Cancer Center Support Grant P30 CA072720.

Footnotes

Publisher's Disclaimer: This Author Accepted Manuscript is a PDF file of a an unedited peer-reviewed manuscript that has been accepted for publication but has not been copyedited or corrected. The official version of record that is published in the journal is kept up to date and so may therefore differ from this version.

Conflicts of interest/Competing interests: The authors declare that they have no competing interests.

Availability of data and materials: Not applicable

Code availability: Not applicable

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