Cancer-Related Internet Use and Its Association With Patient Decision Making and Trust in Physicians Among Patients in an Early Drug Development Clinic: A Questionnaire-Based Cross-Sectional Observational Study

Abstract

Background The role of cancer-related internet use on the patient-physician relationship has not been adequately explored among patients who are cancer-related internet users (CIUs) in early-phase clinical trial clinics. Objective We examined the association between cancer-related internet use and the patient-physician relationship and decision making among CIUs in an early drug development clinic. Methods Of 291 Phase I clinic patients who completed a questionnaire on internet use, 179 were CIUs. Generations were defined by the year of patient’s birth: “millennials” (after 1990) and “Generation X/Y” (1965-1990) grouped as “Millennials or Generation X/Y”; “Baby Boomers” (1946-1964); and “Greatest or Silent Generation” (1945 and earlier). Statistical analyses included the Wilcoxon matched-pairs signed-rank test and the Mann-Whitney U test. Results CIUs were 52% (94/179) female, 44% (78/179) were older than 60 years, and 60% (108/179) had household incomes exceeding US $60,000. The sources of information on cancer and clinical trials included physicians (171/179, 96%), the internet (159/179, 89%), and other clinical trial personnel (121/179, 68%). For the overall sample and each generation, the median values for trust in referring and Phase I clinical trial physicians among early drug development clinic CIUs were 5 on a 0-5 scale, with 5 indicating “complete trust.” CIUs’ trust in their referring (5) and phase 1 (5) physicians was higher than CIUs’ trust in Web-based cancer-related information (3; P <.001 for both). CIUs who reported visiting the National Cancer Institute (NCI) website, NCI.org, to learn about cancer reported higher levels of trust in Web-based cancer-related information than CIUs who did not use the NCI website ( P =.02). Approximately half of CIUs discussed internet information with their doctor. Only 14% (23/165) of CIUs had asked their physician to recommend cancer-related websites, and 24% (35/144) of CIUs reported at least occasional conflict between their physician’s advice and Web-based information. Conclusions Despite the plethora of websites related to cancer and cancer clinical trials, patients in early-phase clinical trial settings trust their physicians more than Web-based information. Cancer-related organizations should provide regularly updated links to trustworthy websites with cancer and clinical trial information for patients and providers and educate providers on reliable cancer websites so that they can better direct their patients to appropriate internet content.

Are English-language online patient education materials related to breast cancer risk assessment understandable, readable, and actionable?

“…Patients will inevitability search the internet for information related to risk upon reading a mammographic report detailing their risk, and possibly before they have a chance to discuss with their provider. Nearly 77% of adults are known to browse online for health-related topics [ 6 ] and approximately 89% of patients are known to browse online directly following a cancer diagnosis [ 39 ].…”

Patient-Reported Out-of-Pocket Costs and Financial Toxicity During Early-Phase Oncology Clinical Trials

“…Other survey questions regarding demographics, duration of time in current early‐phase clinical trial, and how patients paid for their current treatment were based on the experience of the study investigators regarding developing surveys for patients in early‐phase clinical trials [17] and extant literature on financial toxicity [2, 18]. An initial pilot group was asked for feedback to ensure appropriate usability.…”

Association of Smartphone Ownership and Internet Use With Markers of Health Literacy and Access: Cross-sectional Survey Study of Perspectives From Project PLACE (Population Level Approaches to Cancer Elimination)

“…Telehealth, or the use of technology-including the internet and mobile phones-to enable or improve health or health care [4,5], has expanded in scope and capabilities in recent decades. Patients can now access personal health information through patient portals [6], look up health information independently without professional medical guidance [7][8][9][10][11], and provide feedback to other consumers on their experiences with certain hospitals or providers through these media [12]. Studies have shown that the use of technology in the health sector can improve intervention efficacy, patient satisfaction, and, ultimately, clinical outcomes [13][14][15][16][17].…”