Background

9604100

21708

J Health Commun

Journal of health communication

1081-07301087-0415

27466828

6064213

10.1080/10810730.2016.1184358

NIHMS798798

Article

Cancer information seeking and cancer-related health outcomes: a scoping review of the Health Information National Trends Survey literature

Wigfall

Lisa T.

PhD12Friedman

Daniela B.

PhD23

1Department of Health Services Policy and Management, University of South Carolina, Arnold School of Public Health2Statewide Cancer Prevention and Control Program, University of South Carolina, Arnold School of Public Health3Department of Health Promotion, Education, and Behavior, University of South Carolina, Arnold School of Public Health

Corresponding Author: Lisa T. Wigfall, PhD, 915 Greene Street, Room 342, Columbia, SC, 29208, 803-777-7417 (office), 803-777-1836 (fax), lisa.wigfall@sc.edu

3062016

2872016

92016

2872018

2199891005Background

Cancer is a leading cause of death among United States (US) adults. Only 54% of US adults reported seeking cancer information in 2014. Cancer information seeking has been positively associated with cancer-related health outcomes such as screening adherence.

Methods

We conducted a scoping review of studies that used data from the Health Information National Trends Survey (HINTS) in order to examine cancer information seeking in depth and the relationship between cancer information seeking and cancer-related health outcomes. We searched five databases and the HINTS website.

Results

The search yielded a total of 274 article titles. After review of 114 de-duplicated titles, 66 abstracts, and 50 articles, 22 studies met inclusion criteria. Cancer information seeking was the outcome in only four studies. The other 18 studies focused on a cancer-related health outcome. Cancer beliefs, health knowledge, and information seeking experience were positive predictors of cancer information seeking. Cancer-related awareness, knowledge, beliefs, preventive behaviors, and screening adherence were higher among cancer information seekers.

Conclusions

Results from this review can inform other research study designs and primary data collection focused on specific cancer sites or aimed at populations not represented or underrepresented in the HINTS data (e.g., minority populations, those with lower socioeconomic status).

HINTScancer information seekingscoping reviewcancer outcomes

Introduction

Cancer is a leading cause of death among adults in the United States (US) (Centers for Disease Control and Prevention/National Center for Health Statistics, 2015). Despite the high likelihood of either being diagnosed with or otherwise affected by cancer at some point in their lives, many US adults have never looked for information about cancer (National Cancer Institute, 2010). Among cancer information seekers in the US, the Internet was the most commonly used source of information about cancer followed by health care providers (National Cancer Institute, 2010). In fact, more than half of US adults who have ever looked for cancer information reported that the Internet was where they went first during their most recent search for information about cancer (National Cancer Institute, 2010). While online cancer information seeking is highly prevalent among US adults (National Cancer Institute, 2010), disparities in Internet use persist among minority, older, and lower socioeconomic status (SES) groups (Pew Research Center, 2013).

The Health Information National Trends Survey (HINTS) is a population-based survey that has been conducted in the US and Puerto Rico (National Cancer Institute, n.d.). Many researchers have used HINTS data to examine cancer communication (e.g., cancer information seeking) and cancer-related health outcomes (e.g., screening adherence)(Hamilton, Breen, Klabunde, Moser, Leyva, Breslau, & Kobrin, 2015). Our scoping review provides details about how the HINTS questions have been used to examine cancer information seeking. This information would be useful not only to cancer prevention and control researchers interested in using HINTS data, but also those cancer prevention and control researchers who may be interested in modifying the wording of HINTS questions for specific cancer sites. For example, some of the studies used the HINTS mental modules for specific sites such as colorectal, lung, and skin cancer (Hay 2015; Han 2009; Hay 2009; Zhao 2009).

A scoping review “provides a preliminary assessment of the potential size and scope of available research literature. It aims to identify the nature and extent of research evidence.” (Grant and Booth, 2009, p31). This scoping review aimed to summarize and disseminate knowledge about how researchers have used HINTS questions to examine cancer information seeking among US and Puerto Rican adults. Seminal scoping methodology studies (Arksey and O’Malley, 2005; Levac, Colquhoun, O’Brien, 2010) and comprehensive scoping reviews published in the past five years informed our approach for this review (Friedman et al, 2015; Renton et al, 2014).

METHODS

Arskey and O’Malley’s (2005) methodological framework for conducting scoping studies involves: (1) identifying the research question; (2) searching for relevant studies; (3) selecting studies; (4) charting the data; and (5) collating, summarizing, and reporting the results. The process may also involve consulting with relevant stakeholders to inform or validate study findings. The first four stages are described in this section. Stage five is described in the Results section.

Stage 1 – Identifying the research question

It has been suggested that health information seeking, whether it be online or offline, may have a positive impact on behavioral changes that will lead to improved health outcomes, thereby reducing health disparities (David & Case, 2012). We conducted this scoping review to answer the following five research questions (RQ) about cancer information seeking:

RQ1: Where have researchers published their findings about cancer information seeking?

RQ2: How have researchers operationalized cancer information seeking?

RQ3: Which subpopulations of adults in the US and Puerto Rico have researchers used the HINTS data to examine cancer information seeking?

RQ4: Which modifiable factors have been identified as predictors of cancer information seeking?

RQ5: Which cancer-related health outcomes were positively associated with cancer information seeking?

Stage 2 – Search for relevant studies

The primary author (LTW) searched five major databases: CINAHL Complete (n=23 abstracts located), PubMed (n=64 abstracts), Social Sciences Citation Index of the Web of Science Core Collection (n=64), Communication Abstracts (n=30); and Communication and Mass Media Complete (n=36). These online databases were searched using the following search terms and Boolean operators: ((("Health Information National Trends Survey") AND cancer AND information) AND seek*). “Looking” and “searching” were identified during our scoping review process as alternative words to describe “seeking” and were subsequently added to our search term strategy. We repeated the search in all databases using the following search term: ((("Health Information National Trends Survey") AND cancer AND information) AND (seek* OR look* OR search*)). We also searched the HINTS website (http://hints.cancer.gov/research.aspx) for additional studies that we may have missed in the database search.

Stage 3 – Selecting studies

Our study selection process (Figure 1) involved three steps: (1) 274 title reviews, (2) 66 abstract reviews, and (3) 50 full article reviews. Titles that did not focus on information seeking or a cancer-related outcome, or only focused on health information seeking were excluded from subsequent abstract and full text review. All titles that were suggestive of information seeking or a cancer-related health outcome were reviewed. Full articles were reviewed for abstracts that focused on cancer or health information seeking and a cancer-related health outcome.

Only articles published in scientific journals were included. Journal articles that were not written in English language were excluded. Only empirical research studies that examined predictors of cancer information seeking or the association between cancer information seeking and a cancer-related health outcome were included. Thus, non-experimental and descriptive studies were excluded. Online cancer information seeking was a secondary outcome of interest of this scoping review in an effort to further our understanding of the progress toward the Healthy People 2020 Health Communication and Health Information Technology objective of improving access to online health information (Department of Health and Human Services, 2010).

Stage 4 – Charting the data

Two authors (LTW and DBF) developed and pilot tested an abstraction tool using Google Forms. The online abstraction tool, based on previous scoping review tools (e.g., Friedman et al., 2015), contained 53 items that included multiple-choice items, check boxes, and open-ended short and paragraph questions. After the first author conducted the initial full text abstraction, a 10% random sample of articles were reviewed by a co-author (DBF) as a quality control check. All data were entered using the Google Form, which was exported into a Microsoft Excel spreadsheet.

RESULTSStage 5 - Collating, summarizing, and reporting the results

The last stage of Arskey and O’Malley’s (2005) six-stage methodological framework that we used for this scoping review is the collating, summarizing, and reporting the results. Below we describe the selection and overview of included studies. The rest of our results also are reported for each of our research question.

Selection and overview of included studies

After the article review, 28 of 50 studies were excluded. Figure 1 presents the scoping review process and reasons for the inclusion and exclusion of articles. A total of 22 studies were included in this review. Only four studies examined modifiable factors (e.g., cancer beliefs, health knowledge, and information seeking experience) that could impact cancer information seeking behavior. This includes one study that focused on information overload among cancer information seekers. Most (n=18) of the included studies examined the relationship between cancer information seeking and a cancer-related health outcome. Cancer site specific health outcomes included leading causes of cancer death such as colorectal cancer (n=4) (Hay 2015; Chen 2014; Hay 2006; Ling 2006). Gender-specific cancer sites included breast (n=1) (Madadi 2014), cervical (n=1) (Kontos 2012), and prostate (n=1) (Finney-Rutten 2005) cancer. Skin cancer health outcomes were also examined (n=1) (Hay 2009). Two studies looked at multiple cancer sites (i.e., colorectal, lung, skin, and prostate) (Han 2009; McQueen 2008). Several studies examined general cancer-related health outcomes such as awareness about genetic testing, health knowledge, perceptions of cancer risk and other cancer beliefs, smoking cessation, and preventive behaviors such as eating five or more servings of fruits and vegetables daily.

RQ1: Where have researchers published their study findings about cancer information seeking?

Studies were published in 14 scientific journals across the fields of communications, medicine, and public health. More than half (n=12) of the included studies were published in health communication journals such as the Journal of Health Communication and Health Communication. Researchers also published findings in high impact medical (e.g., Breast Cancer Research and Treatment), and public health (e.g., American Journal of Public Health) journals. The HINTS 1 (2003) data was used in most (n=12) studies. It is important to note that two studies using the HINTS 1 (2003) (Madadi 2014) and HINTS 2 (2005) (Hay 2015) a decade or more since these data were collected. Only one study used each of the more recent datasets – HINTS 3 (2007) (Kontos 2012) and HINTS Puerto Rico (2009) (Ortiz 2011). (Table 1) None of the included studies used data from the fourth iteration (Cycles 1–4) of the HINTS.

RQ2: How have researchers operationalized cancer information seeking?

Most of the included studies (n=12) operationalized cancer information seeking as, Have you ever looked for information about cancer from any source? (yes/no) (Kontos 2012, Ortiz 2011, Keally 2010, Zhao 2010, Han 2009, Kaphingst 2009, Zhao 2009, McQueen 2008; Cerully 2006, Ford 2006; Ling 2006). Shim (2006) defined cancer information seeking in the context of having done so within the past year. Two researchers specifically focused on non-seekers (Hay 2015; Ford 2006). Several researchers also looked at surrogate seekers (i.e., having others look for information about cancer on one’s behalf (n=4) (Zhao 2010; McQueen 2008; Arora 2008; Ling 2006). Other cancer information seeking constructs such as barriers encountered during the search process, self-efficacy to conduct future searches, and combinations of seeking with scanning (i.e., paying attention to health information on various media sources) were also used and are described in Table 2.

A secondary focus of our study was to examine online cancer information seeking (6 studies), which one study did by assessing participants’ yes/no responses to whether or not they use the Internet to look for information about cancer (Hay 2009). Hay and colleagues (2009) also asked about sun-protection specific cancer information seeking because the skin cancer mental module included the following yes/no question, In the past 12 months, have you looked for information on the Internet about protecting yourself from the sun? Two studies assessed online cancer information seeking by assessing whether or not cancer information seekers used the Internet during their most recent search for information about cancer (Chen 2014; Kontos 2012). Shim and colleagues (2008) combined the online health/cancer information seeking questions to create a new variable. Finney-Rutten and colleagues (2005) also combined the online health/cancer information seeking questions, but did not provide details about how they constructed the new variable reported in their data table.

Few studies (n=5) explicitly stated that their work was informed by a conceptual model or theoretical framework. The theories or frameworks presented were: Knowledge Gap Hypothesis (Shim 2008); National Center for Research on Evaluation Standards and Student Testing Model of Problem Solving (Kim 2007); National Trends Survey Framework (Kim 2007); Precaution Adoption Process Model (Kim 2007); Precede-Proceed Model (Chen 2014); Risk Perception Attitude (RPA) Framework (Zhao 2009); and Structural Influence Model of Communication Inequalities (Kontos 2012).

RQ3: Which subpopulations of adults in the United States and Puerto Rico have researchers used the HINTS data to examine cancer information seeking?

Population characteristics of all 22 studies are described in Table 3. Only six included studies used the full HINTS sample, which was representative of US and Puerto Rican adults. The HINTS Puerto Rico (2009) data was not subsampled. Most of the included studies (n=13) used subpopulations of the HINTS sample. These subpopulations included adults 45+ years old, females >40 years old, online adults, smokers, and adults who reported consuming less than five servings of fruits and vegetables daily (Finney-Rutten 2005, Ford 2006, Ling 2006, McQueen 2008, Chen 2014, Madadi 2014, Shim 2008, Zhao 2009, Finney-Rutten 2009, Cerully 2006). It is important to note that Finney-Rutten and colleagues (2009) combined HINTS 1 (2003) and HINTS 2 (2005) data which yielded a larger sample of smokers (n=2,257) in comparison to the 340 smokers that Zhao and colleagues (2009) used for their study with HINTS 2 (2005) data. Several studies used data from the colorectal, skin, and lung cancer mental modules (Han 2009, Hay 2009, Hay 2015). The lower age cutoffs for subpopulations used in studies that focused on a specific cancer site were informed by cancer screening guidelines and varied based on the researchers’ objectives. For example, Ford and colleagues (2009) included adults five years younger (i.e., 45+ years old) than the earliest age recommended for colorectal cancer screening. Other researchers used 50 years old as their age cutoff. All of the included studies excluded adults who had been diagnosed with cancer.

RQ4: Which modifiable factors have been identified as positive predictors of cancer information seeking?

There were only four studies that examined cancer information seeking as an outcome (Kaphingst 2009; Niederdeppe 2008; Kim 2007; Shim 2006). This includes one study that examined cancer information overload (Kim 2007). Another study examined not only information scanning in addition to information seeking, but also the interaction between seeking and scanning which was used to create a typology of these two cancer communication behaviors (Shim 2006). Positive cancer beliefs and cancer information seeking experiences have been shown to be positively associated with cancer information seeking. However, included studies found that cancer information seeking self-efficacy was positively associated with cancer information seeking (Zhao 2009), and mean health knowledge score was negatively associated with the interaction between information seeking*scanning typology (Shim 2006). These results are described in Table 3.

RQ5: Which cancer-related health outcomes were positively associated with cancer information seeking?

This includes one study that focused on ambiguity about perceived colorectal, lung, and skin cancer risk (Han 2009). Most of the studies (n=5) focused on colorectal (Chen 2014, Ford 2006, Ling 2006), breast (Madadi 2014), or prostate screening adherence (Finney-Rutten 2005). One study focused preventive behaviors (i.e., sun-protection; n=1) (Hay 2009). Other studies examined on HPV awareness and knowledge (Kontos 2012), and colorectal (Hay 2015, McQueen 2008) or breast/prostate (McQueen 2008) cancer beliefs (Hay 2015). Several studies (n=7) examined cognitive, psychosocial, and preventive behaviors as cancer-related health outcomes including awareness and use of direct-to-consumer genetic tests (n=1) (Ortiz 2011); cancer knowledge (n=1) (Shim 2008); cancer beliefs (n=3) (Kealey 2010, Zhao 2010, Arora 2008), fruit and vegetable daily intake (Cerully 2006), and smoking cessation (Finney-Rutten 2009). These results are presented in Table 3.

DISCUSSION

Cancer information seeking has been shown to be positively associated with cancer-related health outcomes (David and Case 2012, Shim 2006). Although some iterations of the HINTS survey are more focused on cancer information seeking, all versions of the survey that have been administered to date ask, Have you ever looked for information about cancer from any source? Although earlier HINTS iterations asked About how long ago was that? later HINTS iterations do not include this follow-up question. We believe it is helpful that some of the included studies were able to add a timeframe to cancer information seeking such as the past year (Shim 2006) or past week (Niederdeppe 2008). This additional variable was especially important for Niederdeppe and colleagues (2008) who examined associations between cancer information seeking and recent celebrity news events, especially considering short news cycles.

Earlier versions of HINTS also asked about surrogate cancer information seekers, that is Excluding your doctor or health care provider, has someone else ever looked for information about cancer for you? Although later HINTS iterations do assess whether or not participants have looked for information about health or medical topics for someone else, the concept of surrogate cancer information seeking seems to have been abandoned. Nonetheless, this review paper provides a comprehensive summary of how researchers have conceptualized cancer information seeking, including the creation of a group or typology to describe self-seekers, surrogate seekers only, self-seekers and surrogate seekers, and non-seekers (Arora 2008). It is important to note, however, that Arora and colleagues (2008) did not consider surrogate seekers to be cancer information seekers.

The HINTS assessment of online cancer information seeking has varied over the years. Earlier HINTS iterations asked specifically about using the Internet to find information about cancer, e.g., Have you ever visited an Internet web site to learn specifically about cancer? Later HINTS iterations have assessed online cancer information seeking in various ways, leaving some researchers to combine multiple questions as a proxy measure for assessing online cancer information seeking. Recent HINTS iterations have focused more on online health information seeking, which is one of our nation’s Healthy People 2020 goals (Department of Health and Human Services, 2015). The use of different questions to assess online cancer information seeking can become problematic for researchers who are interested in combining multiple years of HINTS data as Finney-Rutten (2009) did to yield a larger data sample for studying subpopulations smokers.

Research Gaps and Recommendations for Future Research

By summarizing the various ways that researchers have used HINTS to operationalize cancer information seeking, this scoping review can inform future research aimed at better understanding this multifaceted concept beyond a simple yes or no response. In addition, the potential limitation of recall bias introduced by asking survey participants about their most recent search could be addressed by giving focus group participants an opportunity to look for cancer information and then in real time ask them about their seeking experiences (Lambert and Loiselle 2008). This could enable researchers to obtain a more reliable measure of cancer information seeking which would likely increase our understanding of the relationship between communication and health-related outcomes. Future research should also involve adapting HINTS questions to ask about people’s search for information about specific cancer sites. As an example, several studies included in this review used the colorectal, lung, and skin cancer mental modules which asked questions about specific cancer types as opposed to cancer in general (Hay 2015; Han 2009; Hay 2009; Zhao 2009). Future research should also try to use more theory-driven questions to describe and explain the relationship between cancer information seeking and cancer-related outcomes. Only five studies included in this scoping review were informed by conceptual or theoretical framework.

Despite efforts to oversample non-Hispanic Blacks, the HINTS population is largely non-Hispanic White, higher SES US adults. Other racial groups (e.g., American Indian/Alaska Natives) are even less represented in HINTS data. We reviewed the full articles for only two studies that collected primary data either in an attempt to include a concept (e.g., numeracy) (Hay, 2015) that was not included in the HINTS data that they were interested in, or adapt the HINTS questions to be more culturally appropriate with their target population (e.g., Haitians, Hualapai Indians not represented or underrepresented in the HINTS data (Kobetz, Dunn Mendoza, Menard, et al., 2010; Teufel-Shone, Cordova-Marks, Susanyatame, Teufel-Shone, & Irwin, 2015). Results from this scoping review can inform other research study designs and primary data collection aimed at populations (e.g., minorities, low socioeconomic status) that are consistently underrepresented in the HINTS data. For example, the survey development process described by Teufel-Shone, et al. 2015 could be useful to future researchers in their selection and adaptation of HINTS questions to be used with other underrepresented populations. Addressing these gaps in the HINTS literature will likely increase the generalizability of HINTS data to non-White, less affluent populations.

Albeit not a longitudinal dataset, HINTS is a very valuable resource for studying cancer-related questions among smaller subpopulation (e.g., cancer survivors, smokers) because several questions are repeated across multiple survey iterations. This scoping review included a study that combined multiple years of HINTS data to examine the relationship between cancer information seeking and smoking status. While cancer in general is still a rare outcome, survivorship is an increasingly important issue as advances in treatment continue to be made. Thus, it will become increasingly important to be able to access a subpopulation of cancer survivors, and to do so using HINTS data would likely require the combination of multiple years of data. The Finney-Rutten, et al. 2009 study is an example that researchers can use in the future to conduct these more complex methodologies to produce larger samples for studying cancer-related outcomes among subpopulations such as smokers and cancer survivors.

Limitations

This study had some limitations. All studies we reviewed used a cross-sectional design. This limited our ability to assess any causal relationships between predictors and cancer information seeking, or cancer information seeking and cancer-related health outcomes. More rigorous study designs are needed to better assess cancer information seeking as cause or effect of cancer-related health outcomes. The fact that we focused on cancer information seeking (which is less studied compared to health information seeking in general) limited the total number of studies (n=22) that were included in this scoping review. However, we were able to not only review and include studies that focused on a variety of cognitive, psychosocial, and behavioral cancer-related health outcomes, but also studies that conceptualized cancer information seeking in various ways that included online and offline seeking, scanning and the interaction between seeking and scanning, seeking experiences and self-efficacy, and seekers’ information overload.

While ideally it would have been useful to examine studies that used more recent HINTS data, the fact that researchers continue to publish their findings in high impact journals underscores the richness of the HINTS datasets. We also were only able to report on one study (Finney-Rutten 2009) that used multiple years of HINTS data to achieve a larger sample of smokers for their study because no full text was available for the other two studies we identified that also used multiple years of HINTS data. The fact that HINTS collects data on the same variables across multiple years is definitely a major strength. We do note, however, that some years the HINTS questions were more heavily focused on cancer information seeking compared to other years. Also, over time, some questions about cancer information seeking have been dropped so that newer questions could be added to assess emerging trends (e.g., health communication between family members and friends) while at the same time minimizing the survey time burden on participants. For example, When was the most recent time you looked for information about cancer?, albeit very relevant in terms of providing context as opposed to having “ever” looked for information about cancer, is not assessed on the most recent iterations of the HINTS. Nonetheless, it is extremely valuable that researchers have the HINTS battery of questions about cancer information seeking that they can use to answer their research questions among their target populations. To this end, this is the first scoping review of HINTS studies that examined cancer information seeking. Therefore, this scoping review can serve as an important resource for helping other researchers to not only examine the relationship between cancer information seeking and cancer-related health outcomes, but further to be able to conceptualize the concept of cancer information seeking which can also include seeking experiences, self-efficacy, and information overload.

Conclusions

Cancer is a leading cause of death among US adults. Vulnerable populations such as racial/ethnic minorities and those of lower SES are disproportionately burdened by cancer disease and death. While the digital divide was previously based on the lack of infrastructure (Chandrasekhar and Ghosh, 2001), communication inequalities are now largely attributed to sociodemographic characteristics (e.g., race/ethnicity, age) and socioeconomic status (SES) (Pew Research Center, 2013; Kontos E, Bennett G, Viswanath K, 2007; Lorence, Park and Fox, 2006).

Although cancer information seeking has been shown to be positively associated with some cancer-related health outcomes (David & Case 2012; Shim 2006), cancer information seeking among US adults is suboptimal and has not changed much over the past decade. This review underscores the need for efforts aimed at improving positive predictors of cancer information seeking in an effort to increase the number of US adults who search for information about cancer and feel confident about being able to find and use cancer information if needed. These efforts should also focus on improving cancer information seeking experiences in an effort to reduce ambiguity about cancer risk, and minimize the number of consumers who feel overloaded by the plethora of information that they are able to find about cancer.

REFERENCES

Arksey

O'Malley

Scoping studies: towards a methodological framework

International Journal of Social Research Methodology2005811932

Arora

Hesse

Rimer

Viswanath

Clayman

Croyle

Frustrated and confused: the American public rates its cancer-related information-seeking experiences

Journal of General Internal Medicine2008233223228

17922166

Center for Disease Control and Prevention/National Center for Health Statistics

Leading Causes of Death

2015

Last accessed on 8/31/2015. Page last reviewed on 1/20/2015

Available at: http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm. Page last updated on 8/21/2015

Centre for Reviews and DisseminationSystematic Reviews: CRD’s Guidance for Undertaking Reviews in Health Care2006

York

University of York

Cerully

Klein

McCaul

Lack of acknowledgment of fruit and vegetable recommendations among nonadherent individuals: Associations with information processing and cancer cognitions

Journal of Health Communication200611S1103115

16641077

Chandrasekhar

Ghosh

Information and communication technologies and health in low income countries: the potential and the constraints

Bulletin of the World Health Organization2001799850855

11584733

Chen

Yamada

Smith

An evaluation of healthcare information on the internet: The case of colorectal cancer prevention

International Journal of Environmental Research and Public Health201411110581075

24424284

Department of Health and Human Services

Healthy People 2020

2015

Last accessed on 7/8/2015

Available at: http://www.healthypeople.gov/ Last updated on 8/31/2015

Finney-Rutten

Meissner

Breen

Vernon

Rimer

Factors associated with men's use of prostate-specific antigen screening: evidence from Health Information National Trends Survey

Preventive Medicine2005404461468

15530599

Finney-Rutten

Augustson

Doran

Moser

Hesse

Health information seeking and media exposure among smokers: a comparison of light and intermittent tobacco users with heavy users

Nicotine & Tobacco Research2009112190196

19264865

Ford

Coups

Hay

Knowledge of colon cancer screening in a national probability sample in the United States

Journal of Health Communication200611S11935

16641072

Friedman

Becofsky

Anderson

Bryant

Hunter

Ivey

Lin

Public perceptions about risk and protective factors for cognitive health and impairment: a review of the literature

International Psychogeriatrics2015113

Grant

Booth

A typology of reviews: an analysis of 14 review types and associated methodologies

Health Information & Libraries Journal200926291108

19490148

Hamilton

Breen

Klabunde

Moser

Leyva

Breslau

Kobrin

Opportunities and Challenges for the Use of Large-Scale Surveys in Public Health Research: A Comparison of the Assessment of Cancer Screening Behaviors

Cancer Epidemiology, Biomarkers and Prevention2015241314

Han

Moser

Klein

Beckjord

Dunlavy

Hesse

Predictors of perceived ambiguity about cancer prevention recommendations: Sociodemographic factors and mass media exposures

Health Communication2009248764772

20183385

Hay

Coups

Ford

DiBonaventura

Exposure to mass media health information, skin cancer beliefs, and sun protection behaviors in a United States probability sample

Journal of the American Academy of Dermatology2009615783792

19596487

Hay

Orom

Kiviniemi

Waters

“I Don’t Know” My Cancer Risk Exploring Deficits in Cancer Knowledge and Information-Seeking Skills to Explain an Often-Overlooked Participant Response

Medical Decision Making2015354436445

25810268

Johnson

Case

Health Information Seeking2012

New York, NY

Peter Lang Publishing, Inc.

Kaphingst

Lachance

Condit

Beliefs about heritability of cancer and health information seeking and preventive behaviors

Journal of Cancer Education2009244351356

19838898

Kealey

Berkman

The relationship between health information sources and mental models of cancer: Findings from the 2005 Health Information National Trends Survey

Journal of Health Communication201015sup3236251

21154096

Kim

Lustria

MLA

Burke

Kwon

Predictors of cancer information overload: findings from a national survey

Information Research20071241214

Kobetz

Mendoza

Menard

Rutten

Diem

Barton

McKenzie

One size does not fit all: Differences in HPV knowledge between Haitian and African American women

Cancer Epidemiology, Biomarkers and Prevention2010192366370

Kontos

Bennett

Viswanath

Barriers and facilitators to home computer and Internet use among urban novice computer users of low socioeconomic position

Journal of Medical Internet Research200794e31

17951215

Kontos

Emmons

Puleo

Viswanath

Contribution of communication inequalities to disparities in human papillomavirus vaccine awareness and knowledge

American Journal of Public Health20121021019111920

22970692

Lambert

Loiselle

Combining individual interviews and focus groups to enhance data richness

Journal of Advanced Nursing2008622228237

18394035

Levac

Colquhoun

O’Brien

Scoping studies: advancing the methodology

Implementation Science20105119

20047652

Ling

Klein

Dang

Relationship of communication and information measures to colorectal cancer screening utilization: results from HINTS

Journal of Health Communication200611S1181190

16641083

Lorence

Park

Fox

Assessing health consumerism on the Web: a demographic profile of information-seeking behaviors

Journal of Medical Systems2006304251258

16978004

Madadi

Zhang

Yeary

KHK

Henderson

Analyzing factors associated with women’s attitudes and behaviors toward screening mammography using design-based logistic regression

Breast Cancer Research and Treatment20141441193204

24510010

McQueen

Vernon

Meissner

Rakowski

Risk perceptions and worry about cancer: does gender make a difference?

Journal of Health Communication20081315679

18307136

National Cancer Institute

Health Information National Trends Survey

Last accessed on 7/8/2015

(n.d.). Available at: http://hints.cancer.gov

National Cancer Institute

HINTS Brief 16: Trends in Cancer Information Seeking

2010

Last accessed on 6/23/2015

Available at: http://hints.cancer.gov/briefsDetails.aspx?ID=235

Niederdeppe

Beyond knowledge gaps: Examining socioeconomic differences in response to cancer news

Human Communication Research2008343423447

Ortiz

López

Flores

Soto-Salgado

Rutten

LJF

Serrano-Rodriguez

Tortolero-Luna

Peer Reviewed: Awareness of Direct-to-Consumer Genetic Tests and Use of Genetic Tests Among Puerto Rican Adults, 2009

Preventing Chronic Disease201185

Pew Research Center

Who’s not online and why

2013

Last accessed on 8/31/2015

Available at: http://www.pewinternet.org/files/old-media//Files/Reports/2013/PIP_Offline%20adults_092513_PDF.pdf

Renton

Tang

Ennis

Cusimano

Bhalerao

Schweizer

Topolovec-Vranic

Web-based intervention programs for depression: a scoping review and evaluation

Journal of Medical Internet Research2014169

Shim

Kelly

Hornik

Cancer information scanning and seeking behavior is associated with knowledge, lifestyle choices, and screening

Journal of Health Communication200611S1157172

16641081

Shim

Connecting Internet use with gaps in cancer knowledge

Health Communication2008235448461

18850392

Teufel-Shone

Cordova-Marks

Susanyatame

Teufel-Shone

Irwin

Documenting cancer information seeking behavior and risk perception in the Hualapai Indian community to inform a community health program

J Community Health2015405991998

Zhao

Cai

The role of risk, efficacy, and anxiety in smokers' cancer information seeking

Health Communication2009243259269

19415558

Zhao

Cancer information disparities between US-and foreign-born populations

Journal of health Communication201015sup3521

Figure 1

Flowchart of scoping review process.

Table 1

Distribution of included studies (n=22) by journal and HINTS iteration

Notes: 2013/2014 Impact Factor; A-HINTS 1 (2003); B-HINTS 2 (2005); C-HINTS 3 (2007); D-HINTS Puerto Rico (2009)

Table 2

Operationalization of cancer information seeking

Outcome	Question & Response Options	First Author (Year)	HINTS 1(2003)	HINTS 2(2005)	HINTS 3(2007)	HINTS PR(2009)
Cancer InformationSeeking	Have you ever looked for information aboutcancer from any source? (yes/no)	Madadi M (2014)	√
		Kontos EZ (2012)			√
		Ortiz (2011)				√
		Kealy E (2010)		√
		Zhao X (2010)		√
		Han (2009)		√
		Kaphingst KA (2009)	√	√
		Zhao X (2009)	√
		McQueen (2008)	√
		Cerully (2006)	√
		Ling BS (2006)	√
		Ford JS (2006)

Cancer InformationSeeking (Past Year)	Have you looked for information about cancerfrom any source? (yes/no) and About how longago was that? (open-ended responses] for days,weeks, months, or years ago) were combined tocreate a new variable. Information seekers had looked for information about cancer within the last year, and Non-seekers had either never looked for information about cancer, or had not looked for information about cancer within the past year	Shim M (2006)	√

Cancer InformationSeeking (Past Week)	Have you looked for information about cancerfrom any source? (yes/no) and About how longago was that? (open-ended responses] for days,weeks, months, or years ago) were combined tocreate a new variable. Past week seekers Other	Niederdeppe (2008)	√

Cancer InformationSeeking (SurrogateSeekers)	Excluding your doctor or health care provider,has someone else ever looked for informationabout cancer for you? (yes/no)	Zhao X (2010)		√
		McQueen (2008)	√
		Ling BS (2006)	√

Cancer InformationSeekers, SurrogateSeekers, and Non-seekers (4 Groups)	Cancer information seeking and surrogateseeking questions were combined to create fourgroups: seekers only; seekers and surrogateseekers; surrogate seekers only, non-seekers.(Seekers=seeker/seeker & surrogate seeker;Non-seekers=surrogate seeker & non-seeker).	Arora NK (2008)	√

Cancer InformationSeeking (Online)	Cancer/Health Information seeking on theInternet (authors don’t adequately explain howthey derived this measure)	Finney-Rutten (2009)	√	√
	Have you ever visited an Internet web site tolearn specifically about cancer? (yes/no)	Hay JL (2009)		√
	Ever looked for information aboutcancer…source=Internet (Internet/Other)	Chen (2014)	√
	Ever looked for information aboutcancer…source =Internet (Internet seeker/Non-Internet seeker/Non-seeker)	Kontos (2012)			√
	Respondents’ Internet use for cancer-specificinformation in the past 12 months was assessed:1 (did not use the Internet to look for health ormedial information), 2 (used the Internet forcancer-unspecific health information), 3 (usedthe Internet for cancer-specific information); M= 2.02, SD = .81.	Shim M (2008)	√

Skin CancerInformation Seeking(Online)	Looked for information on the Internet aboutprotecting themselves from the sun (in the past12 months) (yes/no)	Hay JL (2009)		√

Cancer InformationSeeking Experiences	Based on the results of your most recentsearch for information on cancer, how muchdo you agree or disagree with each of thefollowing statements: It took a lot of effort to get the information you needed You felt frustrated during your search for the information You were concerned about the quality of the information The information you found was too hard to understand Dichotomized (All): strongly agree/agreeversus disagree/strongly disagree	Zhao X (2010)		√

Cancer InformationSeeking Experience(ISEE) Scale	Based on the results of your most recentsearch for information on cancer, how muchdo you agree or disagree with each of thefollowing statements: You wanted more information, but did not know where to find it It took a lot of effort to get the information you needed You did not have the time to get all the information you needed You felt frustrated during your search for the information You were concerned about the quality of the information The information you found was too hard to understand Scores were coded as low/medium/high	Chen (2014)	√
		Arora (2007)	√
		Kim (2007)	√

Cancer InformationOverload	There are so many different recommendationsabout preventing cancer it’s hard to knowwhich ones to follow. (Agree/Disagree)	Kealy (2010)	√	√
Cancer InformationOverload		Kim (2007)

Cancer InformationSeeking Self-Efficacy	Overall, how confident are you that you couldget advice or information about cancer if youneeded it?	Hay JL (2015)		√
Cancer InformationSeeking Self-Efficacy		Chen (2014)	√
	HINTS 2003: 4-point Likert scale was used(very confident/somewhat confident/slightlyconfident/not confident at allHINTS 2005 and beyond: 5-point Likert scale:1=completely confident/5=not confident at all)
	• Dichotomized: completely/very confidentversus somewhat/a little/not confident)	Zhao X (2010)		√
	• Reverse coded: 5=completely confident to1=not confident at all)	Zhao X (2009)		√

Cancer/HealthInformation-Seeking(Summary Score)	The following questions were used tocalculate a summary score: Have you ever looked for information about cancer from any source? (yes/no) Have you ever visited an Internet website to learn specifically about cancer? (yes/no) In the past 12 months, have you read the health sections of a newspaper or magazine? (yes/no) Range: 0–1; Mean: 0.40 (SE=0.01)	Hay JL (2015)		√

Cancer InformationSeeking/Paying Attentionto Media Sources	Paying attention to media sources (TV, radio,newspapers, magazines, Internet) AND everlooked for information about cancer (1-payattention a little/not at all OR no seek; 2=payattention a lot/some OR seek (range: 6–12)	Finney-Rutten (2005)	√

Cancer InformationSeeking * Scanning	Pay attention and seeking variables werecombined to create a typology of cancerinformation scanning and seeking behavior(SBB). The categories of SSB are: ‘low-scan=no seekers, low-scan=seekers,high-scan=no seekers, high-scan=seekers.	Shim M (2006)	√

Table 3

Population/sample characteristics, cancer information seeking behaviors, and cancer-related health outcomes

First Author (Year)	Population/Subpopulation(Sample Size)	Sample Characteristics	Cancer InformationSeeking Behavioral &Psychosocial Factors	Cancer-Related HealthOutcomes & TheoreticalFrameworks	CancerType	HINTS(Year)
Hay (2015)	Participants18+ years oldwhocompleted thecolorectalcancer mentalmodule(1,789/1,937)148=missingdata	Race/ethnicity: 7.8% Hispanic 11.6% Foreign born 20.3 ± 1.58 years in USaSES: 57.3% Some college+ 24.9% ≤$29KCancer History: 10.3% family history of colorectal cancer	Lower cancer/healthinformation seeking summaryscore was positively associatedwith ambiguity about CRC riskperceptions.Self-efficacy (n.s).	7.5% did not know theircomparative CRC risk8.7% did not know theirabsolute CRC risk	CRC	HINTS 2(2005)
Chen (2014)	55+ year oldadults(1,818)	Race/ethnicity: 78% White 10% HispanicSES: 56% Some college+ 58% ≤$35KCancer History: 66% family history of cancer	Online cancer informationseeking was positivelyassociated with CRC screeningadherence.Seeking experiences (n.s.)Self-efficacy (n.s.)	64% were compliant based onthe following CRC screeningguidelines: Colonoscopy <10 years Sigmoidoscopy <5 years FOBT <2 years Precede-Proceed Model	CRC	HINTS 1(2003)
Madadi (2014)	Adherent andnon-adherentwomen>40 years old(2,370)	Race/ethnicity: 77% WhiteSES: 56% Some college+ 36% ≤$25,000/year 49% EmployedCancer History: 75% Family member had cancer	The association between cancerinformation seeking andmammographyattitudes/screening adherencewas not statistically significant.	70% adherent 73% of women 40–64 years were adherent 65% of women 65+ years old were adherent 56% of non-adherent womenwere thinking about getting amammogram	Breastcancer	HINTS 1(2003)
Kontos (2012)	Online andoffline cancerinformationseekers &non-seekers(7,674)	Race/ethnicity: 65% NH White 12% HispanicSES: 60% Some college+ 30% <$35,000/yearCancer History: Not reported	Online cancer informationseeking was positivelyassociated with HPV vaccineawareness and knowledge,which was significantly highercompared to non-seekers.Offline vs. online (n.s.)	70% heard of HPV vaccine70% HPV was a STI75% HPV cause cervical cancer(Note: Awareness/knowledgehighest among online seekers)Structural Influence Model ofCommunication Inequalities	Cervicalcancer	HINTS 3(2007)
Ortiz (2011)	Puerto Ricanadults(611)	Race/ethnicity: Not reported SES: 44.5% College+d 40.2% EmployedCancer History: Not reported	Cancer information seekerswere more aware of genetictesting than non-seekers.	55.8% had heard of direct-to-consumer genetic tests4.3% reported ever having agenetic test.	GeneticTesting	HINTS PR(2009)
Kealey (2010)	US adults(5,586)	Race/ethnicity: 76.9% White 9.3% HispanicSES: 60.3% Some college+ 40.7% <$35,000/yearCancer History: Not reported	Cancer information seekersexperienced significantly lesscancer information overloadthan non-seekers.Cancer information seeking wasnot significantly associated withcancer beliefs or riskperceptions.	Cancer information overload(i.e., ambiguity about how toprevent cancer), beliefs aboutbehavioral/lifestyle cancer riskfactors, and perceptions ofcomparative risk of gettingcancer were assessed.	Allcancers	HINTS 2(2005)
Zhao (2010)	US adults(5,586)	Race/ethnicity: 69.9% White 13.0% HispanicSES: 55.6% College+d 58.6% EmployedCancer History: 11.4% Had cancer	Cancer informationseeking/self-efficacy wasinversely associated withhaving undesirable beliefs aboutcancer among Whites only.Surrogate seeking (n.s.)	Undesirable cancer beliefs werecompared between US andforeign born Whites andHispanics: Cannot lower risk Too many recommendations Everything causes cancer Reluctant to get checked	Allcancers	HINTS 2(2005)
Finney-Rutten (2009)	Smokers(2,257)	Sociodemographics: 59.7% NH White 13.9% HispanicSES: 41.8% College+ 38.9% <$25,000/yearCancer History: 11.4% Had cancer	The relationship between onlinecancer/health informationseeking and smoking status wasnot statistically significant.	Cancer communicationoutcomes were assessed amongmoderate-heavy, light, andintermittent tobacco users.	Lungcancer(smokingis also arisk factorfor othertypes ofcancer)	HINTS 1(2003) &HINTS 2(2005)
Han (2009)	CRC(n=1,788),skin(n=1,594),and lung(n=1,777)cancer mentalmodulesparticipants(5,159)	Race/ethnicity: 79.9% WhiteSES: 51.7% College+Cancer History: Not reported	Cancer information seeking wasinversely associated withambiguity about CRCprevention.Skin cancer (n.s.)Lung cancer (n.s.)	Ambiguity about CRC, skin, andlung cancer prevention wasassessed.	CRC,skin, andlungcancer	HINTS 2(2005)
Hay (2009)	Skin cancermentalmoduleparticipants(1,633)	Race/ethnicity: 66.9% NH White 14.7% HispanicSES: 52.6% College+Cancer History: 9.9% Family member had skin cancer 5.1% Melanoma 4.8% Non-melanoma	Skin cancer informationseeking was a positivelyassociated with some protectivebehaviors (i.e., using sunscreen,wearing sun-protectiveclothing).Skin cancer knowledge (n.s.)Skin cancer beliefs (n.s.)Staying in the shade (n.s.)	Skin cancer knowledge, beliefs,and protective behaviors wereassessed.Protective behaviors were: Sunscreen use Staying in the shad Use of sun-protective clothing	Skincancer	HINTS 2(2005)
Kaphingst (2009)	US adults(n=5,813)	Race/ethnicity: 75% NH WhiteSES: 60% <$50,000/yearCancer history: 13% Had cancer 65% Family member had cancer	Positive beliefs about therelationship between knowingone’s family history/genes andcancer risk reduction waspositively association withcancer information seeking.	N/A – Cancer informationseeking was the outcome ofinterest	Allcancers	HINTS 1(2003)
Zhao (2009)	Smokers whocompleted thelung cancermentalmodule(n=340)	Race/ethnicity: Race/EthnicitySES: EducationCancer history: Not reported(Descriptive statisticswere not reported)	Cancer information seeking waspositively associated withabsolute risk, the interaction ofabsolute* comparative risk,response self-efficacy aboutlung cancer, and self-efficacy.Comparative risk (n.s.)	Lung cancer risk perceptionsand response efficacy (i.e., notmuch one can do to lower theirlung cancer risk) were assessed.Risk Perception Attitude(RPA) Framework	Lungcancer(smokingis also arisk factorfor othercancers)	HINTS 2(2005)
McQueen (2008)	50+ year oldadults(2,519)	Race/ethnicity: 74.5% NH White 6.7% HispanicSES: Not reportedCancer History: Not reported	Cancer information seeking(including surrogate seeking)was not significantly associatedwith cancer beliefs (i.e., worry,risk perceptions).	Cancer worry and riskperceptions were assessed.	Breast,CRC,prostatecancer	HINTS 1(2003)
Niederdeppe 2008	US adults(n=5,585)	Race/ethnicity: Race/ethnicity were not reportedSES: 57.5% Some college+Cancer History: 11.3% Had cancer 71.5% Family member had cancer	Health knowledge waspositively associated withcancer information seeking.Interactions between cancernews events and education,health knowledge, and socialnetworks were also positivelyassociated with cancerinformation seeking.	N/A – Cancer informationseeking was the outcome ofinterestKnowledge Gap Theory	Breast andlungcancer,Hodgkin’slymphoma	HINTS 2(2005)
Shim (2008)	Online adults(3,982)	Race/ethnicity: 76% NH White 8% HispanicSES: 75% Some college+Cancer History: 10% Had cancer 65% Family member had cancer	Online cancer informationseeking was positivelyassociated with cancerknowledge.	Cancer knowledge aboutpreventive behaviors/lifestylefactors and screening wasassessed.Knowledge Gap Theory	Allcancers	HINTS 1(2003)
Arora (2007)	Cancerinformationseekers,surrogateseekers, andnon-seekers(6,369)	Race/ethnicity: 71.8% NH White 11.7% HispanicSES: 51.1% Some college+ 59.8% EmployedCancer History: 10.9% Had cancer 54.2% Family member had cancer	Cancer information seekingexperiences were positivelyassociated with cancer beliefs.	Cancer information seekingexperiences and the followingcancer beliefs were examined: Almost everything causes cancer Not much can be done to prevent cancer There are too many recommendations for preventing cancer	Allcancers	HINTS 1(2003)
Kim (2007)	US adults(n=6,369)	Race/ethnicity: 76.2% NH White 7.3% HispanicSES: 29.9% Some college 24.7% <$25,000 60.7% EmployedCancer history: 5.3% had cancer 44.3% Family member had cancerDescriptive statisticsreported for overloaded	Health literacy was inverselyassociated with cancerinformation overload. However,seekers who were concernedabout the quality of theinformation they found weremore likely to feel overloaded.	N/A – Cancer informationoverload was the outcome ofinterestNational Center for Researchon Evaluation Standards andStudent Testing Model ofProblem SolvingNational Trends SurveyFrameworkPrecaution Adoption ProcessModel	Allcancers	HINTS 1(2003)
Cerully (2006)	US adults whoreportedconsuming <5servings offruits andvegetablesdaily (5,265)	Descriptive statistics werenot reported	Nonlisters (i.e., did not list F/Vconsumption for self or others)were unexpectedly more likelyto be seekers, but less likely totrust sources of cancerinformation as expected.	Cancer communication,knowledge, and beliefs wereexamined among adults whoconsumed less than five servingsof fruits and vegetables daily.	Allcancers	HINTS 1(2003)
Ford (2006)	45+ year oldadults(3,131)	Race/ethnicity: 77.9% NH White 7.6% HispanicSES: 47.6% Some college 31.2% <$25,000Cancer history: 16.7% had cancer 67.3% Family member had cancer	Non-seekers were lessknowledgeable about CRCscreening	Knowledge of CRC screeningrecommendations was examined	CRC	HINTS 1(2003)
Ling (2006)	>50 years oldadults(2,670)	Race/ethnicity: 80.0% White Hispanic not reportedSES: 28.1% Some college+ Income not reportedCancer History: Not reported	Both seekers and those who hadsurrogate seekers were morelikely to be up-to-date on CRCscreening.	CRC cancer screeningadherence was assessed.	CRC	HINTS 1(2003)
Shim (2006)	US adults(n=6,369)	Race/ethnicity: 70.3% White 12.7% HispanicSES: 31.3% Some college+Cancer History: 12.0% Had cancer 62.8% Family member had cancer	Cancer prevention knowledge,lifestyle behaviors, andscreening adherence werepositively associated withcancer information seeking andscanning.However, knowledge wasinversely associated with theinteraction of seeking*scanningbehaviors.	N/A – Seeking and scanningbehaviors were the outcomes ofinterest	CRC,breast,andprostate	HINTS 1(2003)
Finney-Rutten (2005)	50+ year oldmales(927)	Race/ethnicity: 79.5% NH White 7.0% HispanicSES: 27.8% ≤$25,000 49.6% Some college+Cancer History: Not reported	Attention/seeking was notassociated with PSA testing	PSA testing	Prostatecancer	HINTS 1(2003)

Footnotes:

Mean ± Standard Error;

Mean ± Standard Deviation;

Includes cohabitating (or living with a partner);

Does not include vocational/technical training;

AOR=adjusted odds ratio with 95% confidence interval; CRC=colorectal cancer; FOBT=fecal occult blood test; NH=non-Hispanic; NR=not reported; STI=sexually transmitted infection |

p<0.05;

p<0.01;

***

p<0.001