eHealth literacy and web-based patient portal usage among kidney and liver transplant recipients.

Patient portals promote self-management, but require skills with electronic health information which can be measured by a patient's eHealth literacy. We aimed to describe eHealth literacy among a population of kidney transplant (KT) and liver transplant (LT) recipients and to investigate the relationship between eHealth literacy and Web-based patient portal utilization. We conducted phone surveys (August 2016-March 2017) among 178 KT and 110 LT recipients at two large transplant centers, including the eHealth Literacy Scale (eHEALS) and items assessing routine portal usage. Portal users were defined as routine if usage was every day, weekly, or monthly. The mean eHEALS score was 30.9 (SD: 5.4), and 45.4% routinely used the patient portal more than a few times per month. Routine users had higher eHealth literacy than non-routine users and non-users (31.97 vs. 29.97 vs. 28.20, p < .001). Routine users had higher eHealth literacy scores compared with non-users after adjusting for transplant organ type, age, educational level, employment status, mobile Internet access, and transplant center (OR: 1.10, 95% CI: 1.03-1.17). KT and LT recipients who routinely use patient portals have high eHealth literacy compared with other diseased populations, which should be leveraged by encouraging routine usage to improve post-transplant health and medication adherence.

Awareness of the New Kidney Allocation System among United States Dialysis Providers with Low Waitlisting.

It is unknown whether dialysis facility staff are aware of the new kidney allocation system implemented in December 2014, which changed how deceased donor kidneys are allocated and waiting time is calculated. U.S. dialysis facilities with low annual waitlisting (<15.2%) were surveyed as part of a large randomized study. Among 653 facilities, 57.9% of staff were aware of the policy change, with medical directors (84.4%) being more aware than social workers (73.3%), facility administrators (53.1%), nurse managers (46.4%), and other staff (43.8%). Targeted education among dialysis facilities with low waitlisting may help extend the reach of the new policy.

Early behavioral and physiological markers of social anxiety in infants with fragile X syndrome.

BACKGROUND: Social anxiety is highly prevalent in neurotypical children and children with fragile X syndrome (FXS). FXS is a genetic syndrome that is characterized by intellectual disability and an increased risk for autism spectrum disorder. If social anxiety is left untreated, negative outcomes are highly prevalent later in life. However, early detection of social anxiety is challenging as symptoms are often subtle or absent very early in life. Given the prevalence and impairment associated with childhood social anxiety, efforts have accelerated to identify risk markers of anxiety. A cluster of early features of anxiety have been identified including elevated behavioral inhibition, attentional biases, and physiological dysregulation that index early emerging markers of social anxiety. Infants with FXS provide a unique opportunity to study the earlier predictors of social anxiety. The current study utilized a multi-method approach to investigate early markers of social anxiety in 12-month-old infants with FXS. METHOD: Participants included 32 infants with FXS and 41 low-risk controls, all approximately 12 months old. Parent-reported social behavioral inhibition was recorded from the Infant Behavior Questionnaire (IBQ-R). Direct observations of behavioral inhibition and attention were measured during a stranger approach task with respiratory sinus arrhythmia collected simultaneously. RESULTS: Parent-reported social behavioral inhibition was not significantly different between groups. In contrast, direct observations suggested that infants with FXS displayed elevated behavioral inhibition, increased attention towards the stranger, and a blunted respiratory sinus arrhythmia response. CONCLUSIONS: Findings suggest that infants with FXS show both behavioral and physiological markers of social anxiety at 12 months old using a biobehavioral approach with multiple sources of input. Results highlight the importance of a multi-method approach to understanding the complex early emergent characteristics of anxiety in infants with FXS.

Transplant Center Patient Navigator and Access to Transplantation among High-Risk Population: A Randomized, Controlled Trial.

BACKGROUND AND OBJECTIVES: Barriers exist in access to kidney transplantation, where minority and patients with low socioeconomic status are less likely to complete transplant evaluation. The purpose of this study was to examine the effectiveness of a transplant center-based patient navigator in helping patients at high risk of dropping out of the transplant evaluation process access the kidney transplant waiting list. DESIGN, SETTING, PARTICIPANTS & MEASUREMENTS: We conducted a randomized, controlled trial of 401 patients (n=196 intervention and n=205 control) referred for kidney transplant evaluation (January 2013 to August 2014; followed through May 2016) at a single center. A trained navigator assisted intervention participants from referral to waitlisting decision to increase waitlisting (primary outcome) and decrease time from referral to waitlisting (secondary outcome). Time-dependent Cox proportional hazards models were used to determine differences in waitlisting between intervention and control patients. RESULTS: At study end, waitlisting was not significantly different among intervention (32%) versus control (26%) patients overall (P=0.17), and time from referral to waitlisting was 126 days longer for intervention patients. However, the effectiveness of the navigator varied from early (<500 days from referral) to late (≥500 days) follow-up. Although no difference in waitlisting was observed among intervention (50%) versus control (50%) patients in the early period (hazard ratio, 1.03; 95% confidence interval, 0.69 to 1.53), intervention patients were 3.3 times more likely to be waitlisted after 500 days (75% versus 25%; hazard ratio, 3.31; 95% confidence interval, 1.20 to 9.12). There were no significant differences in intervention versus control patients who started evaluation (85% versus 79%; P=0.11) or completed evaluation (58% versus 51%; P=0.14); however, intervention patients had more living donor inquiries (18% versus 10%; P=0.03). CONCLUSIONS: A transplant center-based navigator targeting disadvantaged patients improved waitlisting but not until after 500 days of follow-up. However, the absolute effect was relatively small.

A Randomized Controlled Trial of a Mobile Clinical Decision Aid to Improve Access to Kidney Transplantation: iChoose Kidney.

Kidney transplantation is the preferred treatment for patients with end-stage renal disease, as it substantially increases a patient's survival and is cost saving compared to a lifetime of dialysis. However, transplantation is not universally chosen by patients with renal failure, and limited knowledge about the survival benefit of transplantation vs. dialysis may play a role. We created a mobile application clinical decision aid called iChoose Kidney to improve access to individualized prognosis information comparing dialysis and transplantation outcomes. We describe the iChoose Kidney study, a randomized controlled trial designed to test the clinical efficacy of a mobile health decision aid among end-stage renal disease patients referred for kidney transplantation at three large, diverse transplant centers across the U.S. Approximately 450 patients will be randomized to receive either: (1) standard of care or "usual" transplantation education, or (2) standard of care plus iChoose Kidney. The primary outcome is change in knowledge about the survival benefit of kidney transplantation vs. dialysis from baseline to immediate follow-up; secondary outcomes include change in treatment preferences, improved decisional conflict, and increased access to kidney transplantation. Analyses are also planned to examine effectiveness across subgroups of race, socioeconomic status, health literacy and health numeracy. Engaging patients in health care choices can increase patient empowerment and improve knowledge and understanding of treatment choices. If the effectiveness of iChoose Kidney has a greater impact on patients with low health literacy, lower socioeconomic status, and minority race, this decision aid could help reduce disparities in access to kidney transplantation.