Transplantation has improved health outcomes for patients with end-stage organ failure, doubling median survival rates compared with patients who remain on the waiting list for an organ (kidney 12.4 years vs 5.4 years; liver 11.6 years vs 3.1 years; heart 9.5 years vs 2.3 years; and lung 5.2 years vs 2.3 years) in the last 25 years [1-3]. Immunosuppressant therapy is essential to graft survival, and treatment regimens can be highly complex and a major burden for patients to manage [4]. Transplant recipients, for example, take an average of 11 medications per day and often experience frequent changes in their medication regimen [5,6]. In addition, because of the complex and multidisciplinary nature of their clinical management, transplant recipients are required to navigate complex systems of care by attending frequent clinical appointments, obtaining frequent laboratory and radiologic testing, and meeting with multiple medical specialists.

Modern internet technologies have been used to help manage other complex conditions, including diabetes, HIV, asthma, depression, heart disease, tuberculosis, and end-stage renal disease, leading to improvement in overall health and self-care management [7-13]. These new technologies have increased patient empowerment, decreased office visit rates and phone calls to physicians, and improved adherence to treatment [14,15]. However, little is known about the use of modern Web-based technologies among the transplant recipient patient population. Studies have indicated that owing to the high prescription burden, transplant recipients are interested in Web-based applications to assist in their complex medication management [16]. For example, Browning et al reported that 78% of adult kidney recipients had a positive attitude toward the use of mobile health smartphone apps for medication management [17].

Web-based patient portal systems can enhance convenience, communications, and fidelity in patient care. Despite previous research showing positive patient attitudes toward health technology, it may not be adopted equitably by all patients, and patient portal use is likely decreased in patients of minority race, lower educational level, and older age [18-21]. For example, non-Hispanic whites, younger adults, and those with high levels of education are more likely to use patient portals for diabetes management compared with racial and ethnic minorities, older adults, and those with lower education [18]. Limited access to technology may be a contributor to this gap. Other studies, however, suggest that the observed disparities are less related to access but that a lack of familiarity with data retrieval (eg, electronic health literacy) helps explain the lower portal usage among these disparate groups [22]. Among hospitalized patients with low socioeconomic status, inadequate communication between patients and providers during discharge and posthospital transition periods has also been cited as a potential barrier to medication access and adherence [23]. A patient portal has the potential to overcome barriers in patient-provider communication, but little is known about potential disparities in portal usage among kidney and liver transplant recipients.

The aim of this study was to examine the patient demographic, clinical, and socioeconomic characteristics associated with kidney and liver transplant recipients’ usage of a patient portal among a diverse population transplanted at a large transplant center in the Southeastern United States. Results of this study may help transplant centers better understand which transplant patients use the portal as we seek to improve portal use as a means of improving patient-provider communications and health outcomes.

In this cross-sectional study, we examined patient portal use among all adult patients (N=710) who received a single-organ kidney or liver transplant at a large transplant center in the Southeast between March 2014 and November 2016. Owing to significant clinical and programmatic differences between kidney and liver recipients, which may impact portal use, they were treated as 2 separate cohorts. The patient Web portal is part of the institutional electronic medical record (EMR) system and integrates clinical information into 1 accessible Web interface for patients. Patient information is summarized on the portal landing page, and tabs direct patients to specific functions such as health record overview, medication overview, appointment management, prescription renewal, and bill payment. Health records include laboratory results, which are updated within 36 hours, and radiology reports, which are updated within 7 days, after authorization and review by the ordering physician. The messaging function allows patients to communicate with providers and transplant nurse coordinators. Since the launch of the patient Web portal in March 2014, the patient portal was mentioned to kidney and liver candidates at evaluation for a transplant. At the time of evaluation for kidney candidates and before discharge after transplantation for both liver and kidney recipients, patients received instructions on how to access the portal and were informed that they would receive an email invitation prompting them to register for the portal.

Kidney and liver transplant recipients were identified using the transplant center’s EMR data for demographic variables and linked with data from the national United Network for Organ Sharing (UNOS) database to collect additional demographic, clinical, and socioeconomic variables. All demographic, clinical, and socioeconomic variables were obtained from UNOS with the exception of marital status, which was obtained from the institution’s EMR. If data were missing from UNOS, they were extracted from the EMR if available. Patient zip code was linked to US Census American Community Survey 5-year data from 2014 to collect zip code–level data on poverty. In addition, patient data were linked to patient portal activity, which was documented in Web server logs as part of the institution’s EMR (Cerner Corp, North Kansas City, MO) and included each portal function performed with a timestamp.

The main outcome was patient usage of the Web portal, defined as whether a patient had any recorded activity based on Cerner server logs at any point during the study period, which includes 6 months before transplant and 2 years after transplant.

Demographic variables included age at transplant, gender, race/ethnicity (white, black, Hispanic, or other), marital status (single vs married), patient’s highest level of education (categorized as grade and high school, some college, and college/graduate degree). Sociodemographic variables included insurance at the time of transplant (private vs public, which included Medicare and Medicaid), employment at wait-listing, percent of people living under the federal poverty line in the patient’s zip code (categorized as <10%, 10 to 15%, or ≥15%), and patient distance from transplant center (distance between zip codes). Clinical characteristics included disease etiology, length of stay during time of transplant (calculated by subtracting transplant date from discharge date), functional status at the time of transplant measured by Karnofsky Performance Score (categorized as < vs ≥80%, which was defined as “Normal activity with effort: some symptoms of disease”). For kidney transplant recipients, we collected donor type (deceased or living). For liver transplant recipients, measures of liver disease severity at the time of transplant such as the laboratory model for end-stage liver disease (MELD) score and presence of encephalopathy were also collected. In the liver transplant cohort, we combined Hispanic race/ethnicity with the other race/ethnicity category for higher predictive power. All variables were obtained from UNOS.

In addition, exploratory outcomes were collected, including patient use of specific portal functions over the study period, which were measured using Cerner server logs documenting whether a patient used the portal to make appointments; to view clinical documents, current medications, current allergies, immunization records, visit history, radiology results, or lab results; or to engage in clinical messaging with providers. All time stamps were standardized in reference to the transplant date (t=0). Portal use was measured as a rate: number of clicks in the portal per 100 patients between March 2014 and November 2016.

We compared patient characteristics of portal users versus nonusers by using chi-square tests for categorical variables and independent t tests or Wilcoxon Rank Sum tests for continuous variables. All variables that were significant in these tests were included in a multivariable model. Using backward selection, variables with a risk ratio of 1 in the multivariable model were excluded from the final model. For variables with >10% missing data, a missing category was included for analyses. In addition, descriptive statistics for frequency of portal use functions were calculated for kidney and liver patients.

Patient characteristics of 710 kidney and liver transplant recipients included in the study population are shown in Tables 1 and 2, respectively, of which 64.1% (455/710) were kidney transplant recipients and 35.9% (255/710) were liver transplant recipients; results are stratified by portal usage. Portal usage was slightly higher in kidney transplant patients (55.4%, 252/455) compared with the liver cohort (48.2%, 123/255). The median age of kidney transplant recipients was 49, and the majority of patients were black (56.9%, 259/455) followed by white (33.9%, 154/455), Hispanic (4.4%, 20/455), and other race/ethnicity (4.8%, 22/455). More than half of the kidney recipients were male (55.2%, 251/455)), married (53.4%, 243/455) with the majority having public insurance (73.6%, 335/455), being unemployed at time of wait-listing (55.2%, 251/455), and receiving a deceased donor transplant (61.5%, 280/455). Among the liver transplant recipients, the median age was 53 and the majority of patients were male (59.6%, 152/255), white (71.8%, 183/255), followed by black (23.9%, 61/255), Hispanic (0.8%, 2/255), and other race/ethnicity (3.5%, 9/255). Most patients were married (65.5%, 167/255), had lower education (42.7%, 109/255 completed grade or high school only), and had private insurance (58.4%, 149/255).

About half (55.4%, 252/455) of kidney transplant recipients were portal users (Table 1). Portal usage was the same among males and females (55.2%, 139/252 and 112/203), but portal users were slightly younger than nonusers (median: 49 vs 51; P=.08). Only 46.3% (120/259) of black patients and 25% (5/20) of Hispanic patients used the portal compared with 74.0% (114/154) of white patients (P<.001). Married versus single patients (60.5%, 147/243 vs 50.0%, 104/208; P=.03), patients with college or graduate school education versus grade/high school education (74.8%, 110/147 vs 34.7%, 51/147; P<.001), patients with private versus public insurance (76.7%, 92/120 vs 47.8%, 160/335; P<.001), patients employed versus unemployed (72.6%, 130/179 vs 44.4%, 120/270; P<.001), and the highest zip code poverty–level group versus the lowest zip code poverty–level group (69.0%, 100/145 vs 44.6%, 91/204; P<.001) were more likely to use the portal. Portal users had shorter times on the kidney transplant waiting list compared with nonportal users (608 vs 798 days; P=.06). Patients able to perform normal activity upon discharge used the portal more often compared with patients who were not able to perform normal activity (64.9%, 168/259 vs 42.7%, 82/192; P<.001). Patients with a disease etiology of glomerulonephritis (70.9%, 83/117 used portal) or other cause (68%, 65/96 used portal) were more likely to be portal users compared with patients with diabetes (50%, 43/86) or hypertension (39%; P<.001). Patients with higher (≥80%) versus lower (<80%) functional status (64.9% (168/259) vs 42.7% (82/192); P<.001) and patients with a living versus deceased donor transplant (72.5%, 127/175 vs 44.6%, 125/280; P<.001) were also more likely to be portal users.

In multivariable adjusted log-binomial regression models, the following variables were included in the final model: race/ethnicity, education, employment, insurance, zip code poverty level, marital status, etiology, functional status, and donor type. Once adjusting for these covariates, only the education level remained significant (Table 3). Transplant recipients with a college or graduate degree were more likely to use the patient portal than patients who finished grade and high school only (adjusted risk ratio [aRR] 1.16; 95% CI 1.01-1.32).

About half (48.2%, 123/255) of liver transplant recipients were portal users, with portal use being higher among females versus males (52.4%, 54/103 vs 45.4%, 69/152; P=.27) and white versus black patients (55.2%, 101/183 vs 27.9%, 17/61; P=.27; P=.003) (Table 2). Patients with college or graduate school education versus those who completed grade/high school education only (71%, 36/51 vs 36.7% 40/109; P<.001), patients with private versus public insurance (52.3%, 78/149 vs 42.5%, 45/106; P=.12), and patients employed versus those unemployed (73%, 16/22 vs 46.6% 103/221; P=.02) were more likely to use the portal. Patients who used the portal had longer times on the liver transplant waiting list compared with nonportal users (57 versus 43 days; P=.11) and lower MELD scores compared with nonportal users (21.7 versus 24.2; P=.03). Patients with an alcohol-related disease etiology (60%, 29/48) were more likely to use the portal compared with patients with a viral cause (41%, 37/91) or cause categorized as other (49.1%, 57/116; P=.08). Age, marital status, zip code poverty level, and distance were similar among portal and nonportal users among this cohort.

In multivariable adjusted binomial regression models, gender, race/ethnicity, marital status, education, employment, insurance, etiology, and MELD score were included in the final model (Table 4). In the final adjusted model, only race/ethnicity and education level remained significant. Black patients were significantly less likely than white patients to utilize the portal (adjusted RR 0.65; 95% CI 0.46-0.92). Transplant recipients with some college education or with a college or graduate degree were more likely to use the portal compared with those with a grade or high school education (some college versus grade/high school adjusted RR 1.36; 95% CI 1.01-1.84; college/graduate degree versus grade/high school adjusted RR 1.46; 95% CI 1.08-1.98; Table 4).

In exploratory analyses among portal users, we found that the frequency of overall portal activity among both kidney and liver transplant recipients was similar; however, before transplantation, liver transplant recipients used the portal more frequently (Figure 1). Among both kidney and liver cohorts, there was an increase in recorded portal activity from 6 months (–150) before the time of transplant (t=0; approximately 180 clicks/100 kidney patients and approximately 140 clicks/100 liver patients), which gradually started declining 45 days after transplant. As portal activity gradually increased before transplantation in liver recipients, a more dramatic increase in portal clicks posttransplant was recorded in kidney recipients with more sustained use in the first 400 days of transplant (Figure 1).

Across the entire study period, portal functions were used at different rates among both kidney and liver transplant recipients (Table 5).

Viewing lab results was the most frequent function used over the study period for kidney and liver patients (43.9% and 37.0%, respectively), followed by viewing immunizations (18.1% and 27.9%, respectively), allergies (18.6% and 20.2%, respectively), and messaging (12.0% and 5.2%, respectively; Figure 2). Portal activity for the different viewing functions was similar among kidney and liver transplant recipients, although kidney recipients tended to have higher activity viewing messages compared with liver patients, and liver patients had higher activity viewing immunizations compared with kidney patients.