Exploring Information Seeking Anxiety Among Localized Prostate Cancer Patients

Abstract

Information seeking anxiety is a multidimensional construct that is operationalized as having elements of worry, confusion, and disorganization. Much remains unknown about the ways information seeking anxiety operates among cancer patients in the United States. This study investigated the application of the information seeking anxiety concept among prostate cancer patients by documenting their assessment experiences and examining relationships between information seeking anxiety and treatment information search behaviors. A purposive sample of African American and Caucasian men (N = 63) within 5 years of being diagnosed with localized disease (stage T1 or T2) were recruited to participate through cancer registries, advertisements, and word-of-mouth. Participants completed a self-administered survey with items that collected demographic information, treatment information-seeking behaviors, and information seeking anxiety evaluations. All surveys were completed in one sitting and a majority of men (82.5%, N = 52) completed the information seeking anxiety assessment with no assistance. During their first interactions with available sources of information (e.g., doctors, internet, peers), most survivors (95.2%, N = 60) reported some level of information seeking anxiety. Specifically, 55.5% (N = 35) were confused about what to look for, 60.3% (N = 38) were worried they would not find the right information, 55.5% (N = 35) were uncomfortable with the search process, and 49.2% (N = 31) reported being disorganized. The composite information seeking anxiety measure was moderately correlated with men’s self-reported time to start searching for treatment information (p = .02; r = .306). Information seeking anxiety appears to delay the treatment information gathering activities of prostate cancer survivors with localized disease. This previously undocumented barrier to the delivery of prostate cancer care services should be investigated in other studies with larger and more diverse samples.

Background

Prostate cancer patients need to acquire large amounts of information to help them develop plans for coping with the physical, emotional, and social challenges they might experience at different points on the survivorship continuum (Wolpin et al., 2016). During the acute survivorship phase (i.e., after diagnosis until treatment is started), most information acquisition efforts are focused on treatment care planning (Miller et al., 2016). Individualized care planning is particularly important for localized prostate cancer patients (stage T1 or T2) because there is ambiguity surrounding the disease (Skolarus et al., 2014) and professionals sometimes disagree about optimal treatment approaches for individual patients (Kim et al., 2014).

Personal health literacy refers to the ability to find, understand, and use health information and services for health decisions (Office of Disease Prevention and Health Promotion, n.d.). Research indicates that many male cancer patients are not prepared to engage in information gathering activities when they are initially diagnosed (Cegala et al., 2008). A lack of preparedness to interact with available sources of information (e.g., doctors, internet, peers) can prolong a man’s help-seeking periods and delay treatment care planning (Dobson et al., 2014). Because public health and medical officials may not be adequately trained to identify patients with information gathering deficiencies when relying on subjective judgments, objective methods of identification are needed.

Information seeking anxiety is a psychological phenomenon that captures some of the negative emotions people experience when gathering information. Information seeking anxiety is a multidimensional construct that is operationalized as having elements of worry, confusion, and disorganization (Erfanmanesh et al., 2014). Information seeking anxiety can be easily assessed by asking patients a few questions during a clinical consultation. Most of the information seeking anxiety studies to date have been conducted with healthy populations in Europe and Australia. Consequently, public health and medical experts do not know how information seeking anxiety operates among cancer patients in the United States.

This study investigated the application of the information seeking anxiety concept among prostate cancer patients by documenting their anxiety assessment experiences and examining relationships between information seeking anxiety and treatment information search behaviors.

Method

Research Design/Eligibility

A purposive sample of African American and Caucasian men were recruited to participate in New York and Georgia between 2013 and 2016. All men were recruited through cancer registries, word-of-mouth, and newspaper advertisements. Men were eligible for participation if they were diagnosed with early-stage prostate cancer within the previous 5 years, able to understand English, and self-identified as African American or Caucasian.

Procedures/Instruments

All participants completed a self-administered survey using a touch screen computer during a follow-up treatment consultation. The survey included demographic information, questions about treatment information seeking, and information seeking anxiety. Demographic Information: Information was collected regarding participants’ race, age, level of education, marital status, household income, employment status, and insurance status. Treatment Information Seeking Behavior: Participants were asked “when did they first begin gathering information to make a treatment decision?” Responses were collected on an ordinal scale with options ranging from “1 = before you were diagnosed” to “6 = more than a month after diagnosis.”Information Seeking Anxiety: A composite variable was created as the sum of four indicators of information seeking anxiety (1 = Discomfort, 2 = Confusion, 3 = Worry, and 4 = Organization). Participants were given a “1” to indicate the presence of each negative affect and a “0” to denote its absence (range = 0–4, $\overline{X}$ = 2.29, σ = 1.13). An examination of the multimodal distribution indicated the sample required a tertile split. Using the formula found in Anwar et al. (2004), means and standard deviations were used to classify participants into low ( $\overline{X}$ − 1.0 σ), average ( $\overline{X}\pm 0.5\sigma )$ , and high ( $\overline{X}+1.0\sigma )$ anxiety groups. All men provided written informed consent to participate prior to study enrollment and received a $50 incentive for their involvement. Permission to conduct the study was obtained from the institutional review boards at Roswell Park Cancer Institute (approval # I-198711) and Georgia Southern University (approval # H-14043).

Data Analysis

Participant’s information anxiety assessment experiences, sample characteristics, and information seeking behaviors were computed using univariate and bivariate statistics (i.e., chi-square, t-test, and analysis of variance). Correlations and multiple regression analysis were performed to determine the relationship between information seeking anxiety and time to initial information search. All analyses were computed in SPSS 26, with significance levels set at the p≤ .05 level.

Results

Sixty-three African American and Caucasian prostate cancer survivors completed the survey. Participants were largely White (58.7%, N = 37), married (79.4%, N = 50), and retired (50.8%, N = 32). Most completed high school (96.7%, N = 61), had private insurance (50.7%, N = 32), and had household incomes of $45,000 or greater (49.2%, N = 31). All surveys were completed in one sitting and a majority of men (82.5%, N = 52) completed the information seeking anxiety assessment with no assistance. Several men (55%, N = 35) started searching for treatment information right away (i.e., the day or week they were diagnosed). During their initial searches, most survivors (95.2%, N = 60) reported some level of information seeking anxiety. Specifically, 55% (N = 35) were confused about what to look for, 60.3% (N = 38) were worried they would not find the right information, 55.5% (N = 35) were uncomfortable with the search process, and 49.2% (N = 31) reported being disorganized. The composite information seeking anxiety measure was moderately correlated with men’s self-reported time to start searching for treatment information (p = .02; r = .306). When information seeking anxiety was examined by levels of degree (i.e., low, average, high), several men’s scores placed them in the highest (50.7%, N = 32) anxiety group. While the results were not statistically significant, high information seeking anxiety was most commonly found among men who were unmarried, publicly insured, and without a college education.

Conclusion

Information seeking anxiety appears to delay the treatment information gathering activities of prostate cancer survivors with localized disease. With the reignition of the Cancer Moonshot, future research should focus on interventions that reduce information seeking anxiety during the treatment decision-making process. This study highlights a previously undocumented barrier to the delivery of prostate cancer care that should be investigated in other studies. The cross-sectional nature of this study limits our ability to examine causal effects between study variables. The study’s focus on African American and Caucasian prostate cancer survivors restricts the ability to generalize our findings to men with other types of cancer or prostate cancer survivors from other racial/ethnic groups.