Information-seeking behavior during COVID-19: Opportunities for communication and care transition improvements

ABSTRACT

Purpose: To learn more about how at-risk dialysis and transplant patients sought health information during COVID-19 and what was most helpful, we conducted a mixed-methods study of people contacting a telephone COVID-19 Kidney & Transplant Listening Center. Methods: Participants answered a survey in English or Spanish, including openended and closed-item questions assessing the types of COVID-19 related care transition experiences they had, their telehealth comfort using the Unified Theory of Acceptance and Use of Technology (UTAUT), what types of questions they had, and information-seeking behavior. Thematic analysis was conducted and descriptive statistics were run for quantitative items. Results: 111 participants completed the survey. They were primarily Englishspeakers (84.85%) and of Hispanic/Latino (26.13%), White (24.35%) Black (23.42%) and Asian (23.42%) race/ethnicities, with an average age of 50 years, and with either a bachelor's degree or higher (51.96%). Participants consumed health information at least two times weekly via internet (56.57%), television (40.57%), or print sources (31.13%). They were more likely to learn about health issues from news media (78.38%) than healthcare institutions (57.66%). Nearly 70% talked about health issues with family/friends twice a week. Most patients had experienced a change in care during the pandemic (66.3%), and 44.14% said they had postponed a medical visit. Questions that were raised related to their vaccine priority, higher risk of death as a transplant patient during COVID-19, and how to stay safe at dialysis. A third (28.57%) agreed they could not find specific health information they needed. Participants with high school (HS) degrees or less were less likely to agree that the amount of information they had to make health choices was helpful (P=0.002). Generally, participants believed they had the necessary resources (95.23%) and knowledge (93.27%) to access telehealth, however, those with HS degrees (p=0.002) or Medicare (P<0.001) were less confident. Finally, they reported that a website with FAQs answered by experts (68.47%) or a live chat for questions (67.57%) would be helpful. Conclusions: During the pandemic, patients engaged in high levels of health information seeking weekly, often from media sources versus healthcare institutions that have more accurate kidney-related recommendations.