Caught in the net: Characterizing how testicular cancer patients use the internet as an information source

Abstract

Introduction: Over 70% of Canadians who use the internet search for healthcare information online. This is especially true regarding the young adult population. Testicular cancer is the most commonly diagnosed cancer in men aged 15–29. This study characterizes how testicular cancer patients access healthcare information online, and how this influences their clinical encounters and treatment decisions.
 Methods: From June 2018 to January 2019, a survey consisting of 24 open and close-ended questions was distributed to testicular cancer patients at a tertiary cancer center. Survey results were evaluated using mixed methods analysis.
 Results: Fifty-nine surveys were distributed, and 44 responses were received. All respondents used the internet regularly and 82% used the internet as a source of information regarding their cancer. The majority followed top hits from Google when selecting websites to view. Frequent topics searched included treatment details and survivorship concerns. Eighty-nine percent of users found online information easy to understand and 94% found it increased their understanding. For 47% of users, the internet did not influence their clinical consultation nor their treatment decision (53%).
 Conclusions: Most testicular cancer patients in this study are regular internet users and use the internet to search for testicular cancer information. Healthcare providers should recognize this and can play important roles in discussing online findings with patients to assess their background knowledge and expectations, as well as providing guidance on selecting credible online resources. The results of this study can be used to improve patient-physician communication and education.

Viral Disease Goes Viral: Characterizing How Cancer Patients Use Internet Resources for COVID-19 Information

“…Most patients found the online resources understandable, but 25% did find the information at least somewhat hard to understand, reasonably consistent with previous studies [6][7][8][9][10]. Difficulty in understanding may be due to excessive use of medical jargon, consistent with our website analysis which found that all COVID-19 and cancer websites were written above recommended reading level for public health information.…”

“…Not surprisingly, the youngest age bracket had the highest percentage of CC Internet users, and as we moved up in age bracket, the percentage decreased. These numbers are similar to previous studies looking at cancer patients accessing online information for their specific cancer types [6][7][8][9][10]. In patients who did not use the Internet for COVID-19 and cancer information, the most common reason stated was that they received sufficient information from news outlets.…”

“…Many of our findings are consistent with previous studies done looking at general cancer information seeking patterns online by cancer patients. Congruent with past studies on skin, gynecologic, testicular cancer, breast, and thyroid cancer patients [6][7][8][9][10], nearly all COVID-19 and cancer searches began with a Google search. Most CC Internet users selected websites based on pages from specific reputable sources such as government sites or academic medical institutions.…”

“…To develop the survey, a review of the literature was done regarding patient Internet use with a focus on cancer patients [14] and best practice strategies for medical education surveys [15,16] were incorporated. To date, this survey has been used and iteratively reviewed and refined for a process of validation in more than a dozen unique tumor sites by our research team in the past decade [6][7][8][9][10]. The survey included patient demographics (age, type of cancer, date of diagnosis), Internet usage patterns (frequency, device, use of Internet as a source for COVID-19 and cancer information), search patterns (search engines and search terms used, social media usage, physician recommended sites), website selection and evaluation, the usefulness of the Internet as a resource for COVID-19 and cancer information (usefulness, ease of understanding, discrepancy or discussion with HCP), and the Internet's influence on thoughts and actions related to COVID-19 (prevention measures, attending cancer appointments during COVID, willingness to get vaccinated, anxiety and fear regarding COVID, treatment decisions and clinical relationship with HCP, benefit of Internet compared to other resources).…”

“…Statistics Canada reported in 2018 that 91% of Canadians over 15 years of age used the Internet [5]. Recent studies have shown that cancer patients, specifically, frequent the Internet to search for information on their cancer and guide discussions with their HCPs [6][7][8][9][10]. A trend analysis in the USA showed that there was a 16% increase in internet usage in cancer survivors between 2011 and 2017 [11].…”