Cancer-Related Information Seeking Among Cancer Survivors: Trends ...

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Feb 26, 2015 - J Canc Educ (2016) 31: 348. doi:10.1007/s13187-015-0802-7 ... education, and income; seeking was less likely among older adults, those with ...
J Canc Educ DOI 10.1007/s13187-015-0802-7

Cancer-Related Information Seeking Among Cancer Survivors: Trends Over a Decade (2003–2013) Lila J. Finney Rutten & Amenah A. Agunwamba & Patrick Wilson & Neetu Chawla & Sana Vieux & Danielle Blanch-Hartigan & Neeraj K. Arora & Kelly Blake & Bradford W. Hesse

# American Association for Cancer Education 2015

Abstract The demonstrated benefits of information seeking for cancer patients, coupled with increases in information availability, underscore the importance of monitoring patient information seeking experiences over time. We compared information seeking among cancer survivors to those with a family history of cancer and those with no history of cancer. We identified characteristics associated with greater information seeking among cancer survivors, key sources of cancerrelated information, and changes in information source use over time. Data from five iterations of the Health Information National Trends Survey (HINTS) spanning 2003 to 2013 were merged and analyzed. Frequencies, cross-tabulations, multivariate logistic regression, and multinomial regression analyses were conducted. All data were weighted to provide representative estimates of the adult US population. Cancer information seeking was reported most frequently by cancer survi-

vors (69.8 %). The percentage of cancer survivors who reported information seeking increased from 66.8 % in 2003 to 80.8 % in 2013. Cancer information seeking was independently associated with age, education, and income; seeking was less likely among older adults, those with less education, and those with lower incomes. Compared to respondents in 2003, those in 2005 (odds ratio (OR)=0.40, 95 % confidence interval (CI)=0.24–0.65) and 2008 (OR=.43, 95 % CI=0.26– 0.70) were about half as likely to use the Internet as the first source of cancer information compared to a healthcare provider. Despite overall increases in cancer information seeking and access to health information from a variety of sources, healthcare providers remain a key source of health information for cancer survivors.

Keywords Cancer information . Information seeking . Health information . Cancer survivors . Cancer communication L. J. Finney Rutten (*) : A. A. Agunwamba : P. Wilson Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 1st Street SW, Rochester, MN 55905, USA e-mail: [email protected] N. Chawla Division of Research, Kaiser Permanente, Oakland, CA, USA S. Vieux Research Evaluation and Integration, PCORI, Washington, DC, USA D. Blanch-Hartigan Department of Natural and Applied Sciences, Bentley University, Waltham, MA, USA N. K. Arora : K. Blake : B. W. Hesse Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA

Introduction Since the 1950s, there has been significant progress in the diagnosis and treatment of cancer resulting in a growing population of cancer survivors. Currently, there are over 14.5 million cancer survivors, and this number is expected to continue to grow with the aging of the US population [1]. Throughout their cancer experiences, cancer survivors endure numerous challenges including obtaining appropriate information for treatment, decision-making throughout cancer care, and post-treatment quality of life concerns [2]. Opportunities for cancer survivors to engage in their health and health care are greater than ever with expanding information and

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communication options to support their information needs both during and after treatment [3]. The benefits of information seeking for cancer patients, including enhanced patient involvement in and satisfaction with medical decision making, improved communication with informal care providers, and improvements in quality of life, have been well documented [4–6]. The importance of health information has been recognized as a critical link in shaping ideas about health and behaviors in Healthy People 2020, and attention is being directed to ensure that gaps in health do not arise from disproportionate access to health information [7]. Thus, characterizing patterns in health information seeking will be important to better understand and meet the information-seeking preferences and needs of cancer survivors. For cancer patients, healthcare providers are an important source for information about diagnosis, treatment, and prognosis [5, 8, 9]. However, patients seek cancer information from a variety of sources including friends and family, printed materials, television, radio, and the Internet [3, 5, 10–12]. Among cancer survivors, prior research has shown greater information seeking among those who are younger and better educated. Over the past decades, there has been a dramatic increase in the availability of cancer-related information through an increasing variety of sources, most notably the Internet [13, 14]. Given the beneficial role of information seeking in optimizing patient outcomes and experiences, coupled with sweeping changes in communication technology and information availability, it is important to understand the patient information-seeking experiences and the ways in which these have evolved over time [6]. The purpose of this study was to examine the informationseeking experiences of cancer survivors using data from national probability samples of adults in the USA. The goal was to compare information-seeking patterns among cancer survivors relative to those with only a family history of cancer and those with neither a family nor personal history of cancer and to explore characteristics associated with greater information seeking among cancer survivors. Cancer patients exhibit unique information-seeking behavior shown to be associated with attitudes, perceived normative pressure, and perceived Table 1

behavioral control [15]; all of which are psychosocial determinants influenced by encountering a new set of informational needs to cope with cancer. Individuals with a family history of cancer may play a role in supporting the information needs of their family members with cancer, may perceive themselves at risk for developing cancer, and may be motivated to seek information to reduce their own distress [16]. We also sought to identify the key sources of cancer-related information used by cancer survivors and factors associated with use of different information sources. Finally, given the changes in the communication landscape and availability of health information, we explored whether use of cancer information sources among cancer survivors has changed over time.

Methods Data Collection Data for our analysis are from five iterations of the Health Information National Trends Survey (HINTS) fielded from 2003 to 2013. HINTS collects nationally representative data on the use of and experiences with cancer-related information in the US adult population. Details about the data collection, including sampling design and frame, mode of administration, sample size, and response rates, are summarized for each survey administration in Table 1. Additional details about the sampling strategies and survey design for each of the HINT S surveys have been published previously [17, 18] and are available online (http://hints.cancer.gov). Measures Information Seeking In each survey year, HINTS respondents were asked BHave you ever looked for cancer information from any source?^ (yes/no). First Source of Information For respondents who reported that they had searched for cancer information, first source of information was assessed in 2003, 2005, and 2008 with the following item: BThe most recent time you wanted information

Survey design and methods

Survey

Dates of collection

Survey mode(s)

Sampling frame

Sample size

Final response rates (%)

HINTS 1 HINTS 2 HINTS 3

October 2002–April 2003 February–August 2005 January–April 2008 October 2011–February 2012 October 2012–January 2013

US telephone exchanges US telephone exchanges US telephone exchanges US postal service listing US postal service listing US postal service listing

n=6149 n=5586 n=7674

HINTS 4 cycle 1 HINTS 4 cycle 2

RDD RDD RDD Mail Mail Mail

34.5 20.8 RDD: 24.2 Mail: 40.0 36.7 40.0

RDD random digit dial

n=3959 n=3630

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on cancer, where did you go first?^ These items were not included in HINTS 4 cycles 1 and 2 and therefore cannot be included in our analyses. Responses were collapsed into the following three groups: health care provider, Internet, and other (includes print media, family/friends/coworkers, cancer organizations, and 1-800 telephone numbers). Sociodemographic Variables Sex, age, education, annual household income, race/ethnicity, and whether a respondent had health insurance were assessed in all three survey years and included in the current analyses. For analyses of data including all five HINTS data sets, the sample size was adequate to break race/ethnicity into five categories (Hispanic/ Latino, non-Hispanic White, non-Hispanic Black, nonHispanic Asian, and non-Hispanic other). For the analyses that only included three of the HINTS data sets, the following four categories were used to describe race/ethnicity (Hispanic/ Latino, non-Hispanic White, non-Hispanic Black, and nonHispanic other) where non-Hispanic Asian was combined with non-Hispanic other. Three categories of cancer history were developed based on responses to the following two questions: BHave you ever been diagnosed as having cancer?^ and BHave any of your family members ever had cancer?^: (1) no personal or family history of cancer, (2) no personal but a family history of cancer, and (3) personal history of cancer. For analyses of cancer survivors, time since diagnosis (≤1 year post-diagnosis, 2– 5 years post-diagnosis, 6–10 years post-diagnosis, and 11+ years post-diagnosis). Data Analysis We used SUDAAN version 9.0.1 (RTI International, Research Triangle Park, NC) to estimate standard errors of point estimates for the complex survey data. All data were merged and appropriately weighted to provide representative estimates of the adult US population. Frequencies for information and sociodemographic variables were stratified by cancer history. Cross-tabulations with Wald F-tests were conducted for information variables by sociodemographic characteristics. Among respondents who reported a personal history of cancer, multivariate logistic regression analyses were conducted to examine independent sociodemographic correlates of information variables. Finally, multinomial regression analyses examining information source use were conducted to examine changes over time in source preference while controlling for sociodemographic variables.

Results Overall, a greater percentage of respondents with a personal history of cancer reported having sought cancer information (69.8 %) compared to those with a family history (51.2 %) or no history (29.6 %) of cancer (Table 2). Among respondents

with a personal history of cancer, significant differences in information seeking by survey year, age, education, income, time since diagnosis, and cancer site were observed (Table 2). The percentage of survivors who reported cancer information seeking increased over time from 66.8 % in 2003 to 80.8 % in 2013. The percentage of information seekers varied by age, education, and income with the highest percentage of information seekers observed among those ages 50–64 years (79.8 %) and 35–49 years (78.7 %), those with a college education (81.8 %), and those earning $75,000 or more a year (81.8 %). The greatest percentage of seekers among survivors, when stratified by years post-diagnosis and by cancer site, respectively, were 2 to 5 years post-diagnosis (73.5 %) and those with multiple cancers (80.0 %). Overall, a lower percentage of those with a family history and those with no history of cancer reported seeking, however, the differences observed by survey year, sex, age, education, and income were similar to those observed among survivors (Table 2). Table 2 also summarizes the results of a multivariable logistic model examining sociodemographic associates of cancer information seeking among respondents with a personal history of cancer. Cancer information seeking was independently associated with age with higher odds of being a seeker observed in all age groups compared to those aged 75 and older (Table 2). Compared to college graduates, respondents with less than a high school education (odds ratio (OR)=0.23, 95 % confidence interval (CI)=0.13–0.40) or a high school education (OR=0.52, 95 % CI=0.33–0.82) were less likely to report seeking cancer information. Compared with respondents with annual incomes of $75,000 or greater, those with annual incomes of less than $20,000 (OR=0.52, 95 % CI= 0.30–0.89) were less likely to report that they had sought cancer information. Significant differences in cancer information seeking were observed by time since diagnosis with a lower likelihood of those 6–11 years post-diagnosis being seekers (OR=0.52, 95 % CI=0.30–0.91) compared to those a year or less post-diagnosis. Seeking also differed by cancer site wherein a lower likelihood of seeking was observed among those with other female cancers (OR=0.39, 95 % CI=0.24–0.66) compared to those with breast cancer. No significant differences were observed by sex, race/ethnicity, or health insurance status. Table 3 summarizes survivor characteristics associated with first source of cancer information. In 2008, the highest percentage of survivors reported healthcare providers (44.4 %) and the Internet (36.1 %) as their first source for cancer information. The percentage of survivors reporting use of healthcare providers as a first source of information increased over time from 19.6 % in 2003 to 44.4 % in 2008, while the percentage reporting use of the Internet remained relatively stable over this time period. The percentage of survivors reporting printed materials as a first source of information declined from 25.1 % in 2003 to 10.9 % in 2008.

Total (%)

Total (Wald F=429.6; p