Health Research Participants' Preferences for Receiving Research Results

BACKGROUND: Participants in health research studies typically express interest in receiving results from the studies in which they participate. However, participants’ preferences and experiences related to receiving results are not well understood. In general, existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. METHODS: The present study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate results, their satisfaction with results, and when and how they would like to receive research results from future studies. 70,699 ResearchMatch registrants were notified of the study’s topic. Of the 5,207 registrants who requested full information about the study, 3,381 respondents completed the survey. RESULTS: Approximately 33% of respondents with previous health research participation reported receiving results. Approximately half of respondents with previous research participation reported no opportunity to request results. However, almost all respondents said researchers should always or sometimes offer results to participants. Respondents expressed particular interest in results related to their (or a loved one's) health, as well as information about studies’ purposes and any medical advances based on the results. In general, respondents’ most preferred dissemination methods for results were email and website postings. The least desirable dissemination methods for results included Twitter, conference calls, and text messages. Across all results, we compare the responses of respondents with and without previous research participation experience, and those who have worked in research organizations vs. those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results information included in the survey. CONCLUSIONS: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants’ preferences for receiving results. The study’s findings highlight the potential for inconsistency between respondents’ expressed preferences to receive specific types of results via specific methods and researchers’ unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants’ preferences for receiving research results

Factors Associated with Arkansans’ First Use of Telehealth during the COVID-19 Pandemic

Objective. To examine the factors associated with the first use of telehealth during the COVID-19 pandemic using Andersen’s Model of Healthcare Utilization. Andersen’s Model of Healthcare Utilization allowed the categorization of the independent variables into the following: (1) predisposing factors, including sociodemographic variables and health beliefs; (2) enabling factors, including socioeconomic status and access to care; and (3) need for care, including preexisting or newly diagnosed conditions and reasons to seek out care or to utilize a new mode of care. Methods. Potential respondents (n = 4,077) were identified for recruitment from a volunteer registry in Arkansas. Recruitment emails provided a study description, the opportunity to verify meeting the study’s inclusion criteria and to consent for participation, and a link to follow to complete the survey online. The online survey responses were collected between July and August of 2020 (n = 1,137). Results. Telehealth utilization included two categories: (1) utilizers reported the first use of telehealth services during the pandemic, and (2) nonutilizers reported they had never used telehealth. Lower odds of reporting telehealth utilization during the pandemic were associated with race (Black; OR = 0:57, CI [0.33, 0.96]) and education (high School or less; OR = 0:45, CI [0.25, 0.83]). Higher odds of reporting telehealth utilization included having more than one provider (OR = 2:33, CI [1.30, 4.18]), more physical (OR = 1:12, CI [1.00, 1.25]) and mental (OR 1.53, CI [1.24, 1.88]) health conditions, and changes in healthcare delivery during the pandemic (OR = 3:49, CI [2.78, 4.38]). Conclusions. The results illustrate that disparities exist in Arkansans’ utilization of telehealth services during the pandemic. Future research should explore the disparities in telehealth utilization and how telehealth may be used to address disparities in care for Black Arkansans and those with low socioeconomic status

Association between Diagnosed Anxiety and Depression and Exposure to Life Stressors during the COVID-19 Pandemic

Research suggests that mental health disorders heighten the risk of exposure to life stressors. Drawing on a sample of 754 adults from a survey distributed at six primary care clinics, we examine whether adults who reported ever being diagnosed with depression or anxiety were more likely to experience an employment disruption, a housing disruption, and/or report more COVID-19-related stressors during the COVID-19 pandemic. Individuals who reported ever being diagnosed with depression reported a greater burden (B=.75) of COVID-19-related stressors. Those who reported ever being diagnosed with anxiety had higher odds of experiencing an employment disruption (OR=1.90) and a housing disruption (OR=2.92) and reported about one (B=.97) additional COVID-19-related stressor. Our results suggest that the COVID-19 pandemic may have deepened existing mental health disparities by exposing those with a depression or anxiety diagnosis to additional life stressors

Prevalence and Associations between Food Insecurity and Overweight/Obesity among Native Hawaiian and Pacific Islander Adolescents

Abstract Objective: This study estimates the prevalence of, and associations between, family food insecurity and overweight/obesity among Native Hawaiian and Pacific Islander (NHPI) adolescents and explores sociodemographic factors which might have a moderation effect on the association. Design: Cross-sectional study using 2014 NHPI-National Health Interview Survey (NHIS) data reported by a parent or guardian. Family-level food security was assessed by the United States (US) Department of Agriculture 10-item questionnaire. BMI for age and sex >=85th and 95th percentiles defined overweight and obesity, respectively, according to US Centers for Disease Control and Prevention criteria. Setting: The US, including all 50 states and the District of Columbia. Participants: 383 NHPI adolescents aged 12-17 in the US. Results: A third (33.5%) of NHPI adolescents aged 12-17 were overweight (19.1%) or obese (14.4%); 8.1% had low food security; and 8.5% had very low food security. Mean family food security score was 1.06, which corresponds to marginal food security. We found no association between family food insecurity and adolescent overweight/obesity or between any other covariates and overweight/obesity, except for family Supplemental Nutrition Assistance Program (SNAP) participation. Odds of being overweight/obese were 77% lower for adolescents in families participating in SNAP (OR: 0.23, 95% CI: 0.08-0.64, p=0.007). The association between SNAP participation and lower odds of overweight/obesity was particularly pronounced for adolescent girls in food insecure families. Conclusions: The association between SNAP participation and lower odds of overweight/obesity suggests potential benefit of research to determine whether interventions to increase SNAP enrollment would improve NHPI adolescents’ health outcomes

Parent/guardian intentions to vaccinate children against COVID-19 in the United States

Vaccination is critical for protecting adults and children from COVID-19 infection, hospitalization, and death. Analyzing subsamples of parent/guardians of children age 0–11 (n = 343) and 12–17 (n = 322) from a larger national survey of US adults (n = 2,022), we aimed to assess intentions to vaccinate children and how intentions might vary across parent/guardian sociodemographic characteristics, healthcare coverage, vaccination status, political affiliation, prior COVID-19 infection, exposure to COVID-19 death(s) of family or friends, perceived norms of vaccination, and COVID-19 vaccine hesitancy. We also report the prevalence of vaccinated children for parents whose oldest child was eligible for vaccination at the time of the survey. More than one third of parents whose oldest child was not yet eligible for vaccination (11 or younger) planned to get them vaccinated right away when a vaccine became available to them. Among parents whose child was eligible to be vaccinated (age 12–17 years), approximately a third reported their child had already been vaccinated and approximately a third planned to do so right away. Intentions to vaccinate children age 0 to 11 were significantly associated with age, gender, race/ethnicity, education, COVID-19 vaccination, political affiliation, social norms, and COVID-19 vaccine hesitancy. Intentions to vaccinate children age 12 to 17 were significantly associated with age, education, healthcare coverage, COVID-19 vaccination, political affiliation, social norms, and COVID-19 vaccine hesitancy. We discuss implications for public health officials and for future research