Early Functional Status Change After Cardiopulmonary Resuscitation in a Pediatric Heart Center: A Single-Center Retrospective Study.

Children with cardiac disease are at significantly higher risk for in-hospital cardiac arrest (CA) compared with those admitted without cardiac disease. CA occurs in 2-6% of patients admitted to a pediatric intensive care unit (ICU) and 4-6% of children admitted to the pediatric cardiac-ICU. Treatment of in-hospital CA with cardiopulmonary resuscitation (CPR) results in return of spontaneous circulation in 43-64% of patients and survival rate that varies from 20 to 51%. We aimed to investigate the change in functional status of survivors who experienced an in-hospital CA using the functional status scale (FSS) in our heart center by conducting a retrospective study of all patients 0-18 years who experienced CA between June 2015 and December 2020 in a free-standing university-affiliated quaternary children's hospital. Of the 165 CA patients, 61% (n = 100) survived to hospital discharge. The non-survivors had longer length from admission to CA, higher serum lactate levels peri-CA, and received higher number of epinephrine doses. Using FSS, of the survivors, 26% developed new morbidity, and 9% developed unfavorable outcomes. There was an association of unfavorable outcomes with longer CICU-LOS and number of epinephrine doses given. Sixty-one-percent of CA patients survived to hospital discharge. Of the survivors, 26% developed new morbidity and 91% had favorable outcomes. Future multicenter studies are needed to help better identify modifiable risk factors for development of poor outcomes and help improve outcomes of this fragile patient population.

The Prevalence of Second Victim Syndrome and Emotional Distress in Pediatric Intensive Care Providers.

Pediatric critical care providers are at higher risk of second victim syndrome (SVS) and emotional distress after a poor patient outcome, unanticipated adverse event, medical error, or patient-related injury. We sought to determine the prevalence of SVS within our intensive care units (ICUs) and evaluate the adequacy of current institutional peer support. A validated survey tool, the second victim experience and support tool was sent electronically to all ICU providers in our pediatric health care system. Of 950 recipients, there were 266 respondents (28%). Sixty-one per cent of respondents were nurses; 19% were attending physicians, advanced practice providers, and fellows; 88% were females; 42% were aged 25 to 34 years; and 43% had worked in the ICU for 0 to 5 years. The most common emotion experienced was psychological distress (42%) and one-third of respondents questioned their self-efficacy as a provider after a second victim event. Support from colleagues, supervisors, and the institution was perceived as low. Support from a respected peer was the most desired type of support by 81% of respondents. Emotional distress and SVS are commonly found among pediatric ICU providers and the level of support is perceived as inadequate. Developing and deploying a peer support program are crucial to staff's well-being and resilience in the high-stress ICU environment.

Attitudes and Beliefs About HIV Treatment as Prevention Among People Who are Not Engaged in HIV Care, 2018-2019.

Treatment as prevention (TasP) is an effective HIV prevention strategy. Our objectives were to explore TasP attitudes and beliefs among people with HIV (PWH) who are not engaged in care and to examine attitudes and beliefs by selected characteristics. We sampled PWH who had participated in the Medical Monitoring Project (MMP), a structured interview survey, from June 2018-May 2019 to participate in 60-minute semi-structured telephone interviews. We obtained sociodemographic and behavioral quantitative data from the MMP structured interview. We used applied thematic analysis to analyze the qualitative data and integrated the qualitative and quantitative data during analysis. Negative attitudes and beliefs, especially skepticism and mistrust, about TasP were pervasive. Only one participant who identified as female, was not sexually active, and had not heard of TasP held positive attitudes and beliefs about TasP. TasP messages should use clear and unambiguous language, address mistrust, and reach people who are not engaged in medical care.

Incidence and recovery of post-surgical heart block in children following cardiac surgery.

BACKGROUND: A subset of patients who develop post-surgical heart block have recovery of atrioventricular node function. Factors predicting recovery are not understood. We investigated our centre's incidence of post-surgical heart block and examine factors associated with recovery of atrioventricular node function. METHODS: We conducted a single-centre retrospective study of patients 0 - 21 years who underwent cardiac surgery between January 2010 and December 2019 and experienced post-operative heart block. Data including patient and clinical characteristics and operative variables were collected and analysed. RESULTS: Of 6333 surgical hospitalisations, 128 (2%) patients developed post-operative heart block. Of the 128 patients, 90 (70%) had return of atrioventricular node function, and 38 (30%) had pacemaker placement. Of the 38 patients who underwent pacemaker placement, 6 (15.8%) had recovery of atrioventricular node function noted on long-term follow-up. Median time from onset of heart block to late atrioventricular node recovery was 13 days (Interquartile range: 5 - 117). Patients with single-ventricle physiology (p = 0.04), greater weight (p = 0.03), and shorter cardiopulmonary bypass time (p = 0.015) were more likely to have recovery. The use of post-operative steroids was similar between all groups (p = 0.445). Infectious or wound complications were similar between pacemaker groups (p = 1). CONCLUSIONS: Two per cent of patients who underwent congenital cardiac surgery developed post-operative heart block, and 0.6% underwent pacemaker placement. Early recovery of atrioventricular node was associated with greater weight at the time of surgery, single-ventricle physiology, and shorter cardiopulmonary bypass time. Late recovery of atrioventricular node conduction following pacemaker placement occurred in 15.8% of patients.

A comparison of high-flow nasal cannula versus non-invasive positive pressure ventilation for respiratory support in infants following cardiac surgery.

BACKGROUND: Following cardiac surgery, infants often remain endotracheally intubated upon arrival to the cardiac ICU. High-flow nasal cannula and non-invasive positive pressure ventilation are used to support patients following extubation. There are limited data on the superiority of either mode to prevent extubation failure. METHODS: We conducted a single-centre retrospective study for infants (<1 year) and/or <10 kg who underwent cardiac surgery between 3/2019-3/2020. Data included patient and clinical characteristics and operative variables. The study aimed to compare high-flow nasal cannula versus non-invasive positive pressure ventilation following extubation and their association with extubation failure. Secondarily, we examined risk factors associated with extubation failure. RESULTS: There were 424 patients who met inclusion criteria, 320 (75%) were extubated to high-flow nasal cannula, 104 (25%) to non-invasive positive pressure ventilation, and 64 patients (15%) failed extubation. The high-flow nasal cannula group had lower rates of extubation failure (11%, versus 29%, p = 0.001). Infants failing extubation were younger and had higher STAT score (p < 0.05). Compared to high-flow nasal cannula, non-invasive positive pressure ventilation patients were at 3.30 times higher odds of failing extubation after adjusting for patient factors (p < 0.0001). CONCLUSIONS: Extubation failure after cardiac surgery occurs in smaller, younger infants, and those with higher risk surgical procedures. Patients extubated to non-invasive positive pressure ventilation had 3.30 higher odds to fail extubation than patients extubated to high-flow nasal cannula. The optimal mode of respiratory support in this patient population is unknown.

Milrinone for treatment of elevated lactate in the pre-operative newborn with hypoplastic left heart syndrome.

BACKGROUND: There is a paucity of information reported regarding the use of milrinone in patients with hypoplastic left heart syndrome prior to the Norwood procedure. At our institution, milrinone is initiated in the pre-operative setting when over-circulation and elevated serum lactate levels develop. We aimed to review the responses associated with the administration of milrinone in the pre-operative hypoplastic left heart syndrome patient. Second, we compared patients who received high- versus low-dose milrinone prior to Norwood procedure. METHODS: Single-centre retrospective study of patients diagnosed with hypoplastic left heart syndrome between January 2000 and December 2019 who underwent Norwood procedure. Patient characteristics and outcomes were compared. RESULTS: During the study period, 375 patients were identified; 79 (21%) received milrinone prior to the Norwood procedure with median lactate 2.55 mmol/l, and SpO2 93%. Patients who received milrinone were older at the time of Norwood procedure (6 vs. 5 days) and were more likely to be intubated and sedated. In a subset analysis stratifying patients to low- versus high-dose milrinone, median lactate decreased from time of initiation (2.39 vs 2.75 to 1.6 vs 1.8 mmol/l) at 12 hours post-initiation, respectively. Repeated measures analysis showed a significant decrease in lactate levels by 4 hours following initiation of milrinone, that persisted over time, with no significant difference in mean arterial pressure. CONCLUSIONS: The use of milrinone in the pre-operative over-circulated hypoplastic left heart syndrome patient is well tolerated, is associated with decreased lactate levels, and was not associated with significant hypotension or worsening of excess pulmonary blood flow.

Outcomes for unplanned reinterventions following paediatric cardiac surgery for tetralogy of Fallot.

BACKGROUND: Advances in surgical techniques and post-operative management of children with CHD have significantly lowered mortality rates. Unplanned cardiac interventions are a significant complication with implications on morbidity and mortality. METHODS: We conducted a single-centre retrospective case-control study for patients (<18 years) undergoing cardiac surgery for repair of Tetralogy of Fallot between January 2009 and December 2019. Data included patient characteristics, operative variables and outcomes. This study aimed to assess the incidence and risk factors for reintervention of Tetralogy of Fallot after cardiac surgery. The secondary outcome was to examine the incidence of long-term morbidity and mortality in those who underwent unplanned reinterventions. RESULTS: During the study period 29 patients (6.8%) underwent unplanned reintervention, and were matched to 58 patients by age, weight and sex. Median age was 146 days, and median weight was 5.8 kg. Operative mortality was 7%, and 1-year survival was 86% for the entire cohort (cases and controls). Hispanic patients were more likely to have reinterventions (p = 0.04) in the unadjusted analysis, while Asian, Pacific Islander and Native American (p = 0.01) in the multi-variate analysis. Patients that underwent reintervention were more likely to have post-op arrhythmia, genetic syndromes and higher operative and 1-year mortality (p < 0.05). CONCLUSION: Unplanned cardiac interventions following Tetralogy of Fallot repair are common, and associated with increased operative, and 1-year mortality. Race, genetic syndromes and post-operative arrhythmia are associated with increased odds of unplanned reinterventions. Future studies are needed to identify modifiable risk factors to minimise unplanned reinterventions.

Effect of the ASCENT Intervention to Increase Knowledge of Kidney Allocation Policy Changes Among Dialysis Providers.

INTRODUCTION: The Allocation System Changes for Equity in Kidney Transplantation (ASCENT) trial was a cluster-randomized pragmatic, effectiveness-implementation study designed to test whether a multicomponent educational intervention targeting leadership, clinic staff, and patients in dialysis facilities improved knowledge and awareness of the 2014 Kidney Allocation System (KAS) change. METHODS: Participants included 690 dialysis facility medical directors, nephrologists, social workers, and other staff within 655 US dialysis facilities, with 51% (n = 334) in the intervention group and 49% (n = 321) in the control group. Intervention activities included a webinar targeting medical directors and facility staff, an approximately 10-minute educational video targeting dialysis staff, an approximately 10-minute educational video targeting patients, and a facility-specific audit and feedback report of transplant performance. The control group received a standard United Network for Organ Sharing brochure. Provider knowledge was a secondary outcome of the ASCENT trial and the primary outcome of this study; knowledge was assessed as a cumulative score on a 5-point Likert scale (higher score = greater knowledge). Intention-to-treat analysis was used. RESULTS: At baseline, nonintervention providers had a higher mean knowledge score (mean ± SD, 2.45 ± 1.43) than intervention providers (mean ± SD, 2.31 ± 1.46). After 3 months, the average knowledge score was slightly higher in the intervention (mean ± SD, 3.14 ± 1.28) versus nonintervention providers (mean ± SD, 3.07 ± 1.24), and the estimated mean difference in knowledge scores between the groups at follow-up minus the mean difference at baseline was 0.25 (95% confidence interval [CI], 0.11-0.48; P = 0.039). The effect size (0.41) was low to moderate. CONCLUSION: Dialysis facility provider education could help extend the impact of a national policy change in organ allocation.

Racial, Ethnic, and Socioeconomic Disparities in Web-Based Patient Portal Usage Among Kidney and Liver Transplant Recipients: Cross-Sectional Study.

BACKGROUND: Kidney and liver transplant recipients must manage a complex care regimen after kidney transplant. Although the use of Web-based patient portals is known to improve patient-provider communication and health outcomes in chronic disease populations by helping patients manage posttransplant care, disparities in access to and use of portals have been reported. Little is known about portal usage and disparities among kidney and liver transplant recipients. OBJECTIVE: The aim of this study was to examine patient racial/ethnic, socioeconomic, and clinical characteristics associated with portal usage among kidney and liver transplant recipients. METHODS: The study included all adult kidney and liver transplant recipients (n=710) at a large academic transplant center in the Southeastern United States between March 2014 and November 2016. Electronic medical record data were linked with Cerner portal usage data. Patient portal use was defined as any portal activity (vs no activity) recorded in the Cerner Web-based portal, including viewing of health records, lab results, medication lists, and the use of secure messaging. Multivariable log-binomial regression was used to determine the patient demographic, clinical, and socioeconomic characteristics associated with portal usage, stratified by organ. RESULTS: Among 710 transplant recipients (n=455 kidney, n=255 liver), 55.4% (252/455) of kidney recipients and 48.2% (123/255) of liver recipients used the patient portal. Black patients were less likely to use the portal versus white patients among both kidney (57% black vs 74% white) and liver (28% black vs 55% white) transplant recipients. In adjusted multivariable analyses, kidney transplant recipients were more likely to use the portal if they had higher education; among liver recipients, patients who were white versus black and had higher education were more likely to use the portal. CONCLUSIONS: Despite studies showing that patient portals have the potential to benefit transplant recipients as a tool for health management, racial and socioeconomic disparities should be considered before widespread implementation. Transplant centers should include portal training and support to all patients to encourage use, given its potential to improve outcomes.

Racial disparities in preemptive referral for kidney transplantation in Georgia.

BACKGROUND: Racial disparities persist in access to kidney transplantation. Racial differences in preemptive referral, or referral prior to dialysis start, may explain this discrepancy. METHODS: Patient-level data on kidney transplant referrals (2005-2012) from all Georgia transplant centers were linked to the United States Renal Data System to examine racial disparities in preemptive referral, waitlisting, and living donor transplant. Adjusted logistic regression and Cox proportional hazard models determined the associations between race (African American vs white) and preemptive referral, and placement on the waitlist and receipt of a living donor kidney, respectively. RESULTS: Among 7752 adults referred for transplant evaluation, 20.38% (n = 1580) were preemptively referred. The odds of African Americans being preemptively referred for transplant evaluation were 37% (OR = 0.63; [95% CI: 0.55 0.71]) lower than white patients. Among preemptively referred patients, there was no racial difference (African Americans compared to white patients. HR = 0.96; [95% CI: 0.88, 1.04]) in waitlisting. However, African Americans were 70% less likely than white patients to receive a living donor transplant (HR = 0.30; [95% CI: 0.21, 0.42]). CONCLUSION: Racial disparities in transplant receipt may be partially explained by disparities in preemptive referral. Interventions to reduce racial disparities in kidney transplant access may need to be targeted earlier in the disease process.

Awareness of Racial Disparities in Kidney Transplantation among Health Care Providers in Dialysis Facilities.

BACKGROUND AND OBJECTIVES: Despite the important role that health care providers at dialysis facilities have in reducing racial disparities in access to kidney transplantation in the United States, little is known about provider awareness of these disparities. We aimed to evaluate health care providers' awareness of racial disparities in kidney transplant waitlisting and identify factors associated with awareness. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We conducted a cross-sectional analysis of a survey of providers from low-waitlisting dialysis facilities (n=655) across all 18 ESRD networks administered in 2016 in the United States merged with 2014 US Renal Data System and 2014 US Census data. Awareness of national racial disparity in waitlisting was defined as responding "yes" to the question: "Nationally, do you think that African Americans currently have lower waitlisting rates than white patients on average?" The secondary outcome was providers' perceptions of racial difference in waitlisting at their own facilities. RESULTS: Among 655 providers surveyed, 19% were aware of the national racial disparity in waitlisting: 50% (57 of 113) of medical directors, 11% (35 of 327) of nurse managers, and 16% (35 of 215) of other providers. In analyses adjusted for provider and facility characteristics, nurse managers (versus medical directors; odds ratio, 7.33; 95% confidence interval, 3.35 to 16.0) and white providers (versus black providers; odds ratio, 2.64; 95% confidence interval, 1.39 to 5.02) were more likely to be unaware of a national racial disparity in waitlisting. Facilities in the South (versus the Northeast; odds ratio, 3.05; 95% confidence interval, 1.04 to 8.94) and facilities with a low percentage of blacks (versus a high percentage of blacks; odds ratio, 1.86; 95% confidence interval, 1.02 to 3.39) were more likely to be unaware. One quarter of facilities had >5% racial difference in waitlisting within their own facilities, but only 5% were aware of the disparity. CONCLUSIONS: Among a limited sample of dialysis facilities with low waitlisting, provider awareness of racial disparities in kidney transplant waitlisting was low, particularly among staff who may have more routine contact with patients.

Racial/ethnic disparities in waitlisting for deceased donor kidney transplantation 1 year after implementation of the new national kidney allocation system.

The impact of a new national kidney allocation system (KAS) on access to the national deceased-donor waiting list (waitlisting) and racial/ethnic disparities in waitlisting among US end-stage renal disease (ESRD) patients is unknown. We examined waitlisting pre- and post-KAS among incident (N = 1 253 100) and prevalent (N = 1 556 954) ESRD patients from the United States Renal Data System database (2005-2015) using multivariable time-dependent Cox and interrupted time-series models. The adjusted waitlisting rate among incident patients was 9% lower post-KAS (hazard ratio [HR]: 0.91; 95% confidence interval [CI], 0.90-0.93), although preemptive waitlisting increased from 30.2% to 35.1% (P < .0001). The waitlisting decrease is largely due to a decline in inactively waitlisted patients. Pre-KAS, blacks had a 19% lower waitlisting rate vs whites (HR: 0.81; 95% CI, 0.80-0.82); following KAS, disparity declined to 12% (HR: 0.88; 95% CI, 0.85-0.90). In adjusted time-series analyses of prevalent patients, waitlisting rates declined by 3.45/10 000 per month post-KAS (P < .001), resulting in ≈146 fewer waitlisting events/month. Shorter dialysis vintage was associated with greater decreases in waitlisting post-KAS (P < .001). Racial disparity reduction was due in part to a steeper decline in inactive waitlisting among minorities and a greater proportion of actively waitlisted minority patients. Waitlisting and racial disparity in waitlisting declined post-KAS; however, disparity remains.

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.

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.

Effect of the iChoose Kidney decision aid in improving knowledge about treatment options among transplant candidates: A randomized controlled trial.

We previously developed a mobile- and web-based decision aid (iChoose Kidney) that displays individualized risk estimates of survival and mortality, for the treatment modalities of dialysis versus kidney transplantation. We examined the effect of iChoose Kidney on change in transplant knowledge and access to transplant in a randomized controlled trial among patients presenting for evaluation in three transplant centers. A total of 470 patients were randomized to standard transplantation education (control) or standard education plus iChoose Kidney (intervention). Change in transplant knowledge (primary outcome) among intervention versus control patients was assessed using nine items in pre- and postevaluation surveys. Access to transplant (secondary outcome) was defined as a composite of waitlisting, living donor inquiries, or transplantation. Among 443 patients (n = 226 intervention; n = 216 control), the mean knowledge scores were 5.1 ± 2.1 pre- and 5.8 ± 1.9 postevaluation. Change in knowledge was greater among intervention (1.1 ± 2.0) versus control (0.4 ± 1.8) patients (P < .0001). Access to transplantation was similar among intervention (n = 168; 74.3%) versus control patients (n = 153; 70.5%; P = .37). The iChoose Kidney decision aid improved patient knowledge at evaluation, but did not impact transplant access. Future studies should examine whether combining iChoose Kidney with other interventions can increase transplantation. (Clinicaltrials.gov NCT02235571).

The ASCENT (Allocation System Changes for Equity in Kidney Transplantation) Study: a Randomized Effectiveness-Implementation Study to Improve Kidney Transplant Waitlisting and Reduce Racial Disparity.

INTRODUCTION: The United Network for Organ Sharing (UNOS) implemented a new Kidney Allocation System (KAS) in December 2014 that is expected to substantially reduce racial disparities in kidney transplantation among waitlisted patients. However, not all dialysis facility clinical providers and end stage renal disease (ESRD) patients are aware of how the policy change could improve access to transplant. METHODS: We describe the ASCENT (Allocation System Changes for Equity in KidNey Transplantation) study, a randomized controlled effectiveness-implementation study designed to test the effectiveness of a multicomponent intervention to improve access to the early steps of kidney transplantation among dialysis facilities across the United States. The multicomponent intervention consists of an educational webinar for dialysis medical directors, an educational video for patients and an educational video for dialysis staff, and a dialysis-facility specific transplant performance feedback report. Materials will be developed by a multidisciplinary dissemination advisory board and will undergo formative testing in dialysis facilities across the United States. RESULTS: This study is estimated to enroll ~600 U.S. dialysis facilities with low waitlisting in all 18 ESRD Networks. The co-primary outcomes include change in waitlisting, and waitlist disparity at 1 year; secondary outcomes include changes in facility medical director knowledge about KAS, staff training regarding KAS, patient education regarding transplant, and a medical director's intent to refer patients for transplant evaluation. CONCLUSION: The results from the ASCENT study will demonstrate the feasibility and effectiveness of a multicomponent intervention designed to increase access to the deceased-donor kidney waitlist and reduce racial disparities in waitlisting.

New Kidney Allocation System Associated With Increased Rates Of Transplants Among Black And Hispanic Patients.

Before the 2014 implementation of a new kidney allocation system by the United Network for Organ Sharing, white patients were more likely than black or Hispanic patients to receive a kidney transplant. To determine the effect of the new allocation system on these disparities, we examined data for 179,071 transplant waiting list events in the period June 2013-September 2016, and we calculated monthly transplantation rates (34,133 patients actually received transplants). Implementation of the new system was associated with a narrowing of the disparities in the average monthly transplantation rates by 0.29 percentage point for blacks compared to whites and by 0.24 percentage point for Hispanics compared to whites, which resulted in both disparities becoming nonsignificant after implementation of the new system.

Decisional conflict between treatment options among end-stage renal disease patients evaluated for kidney transplantation.

Although kidney transplantation provides a significant benefit over dialysis, many patients with end-stage renal disease (ESRD) are conflicted about their decision to undergo kidney transplant. We aimed to identify the prevalence and characteristics associated with decisional conflict between treatment options in ESRD patients presenting for transplant evaluation. Among a cross-sectional sample of patients with ESRD (n=464) surveyed in 2014 and 2015, we assessed decisional conflict through a validated 10-item questionnaire. Decisional conflict was dichotomized into no decisional conflict (score=0) and any decisional conflict (score>0). We investigated potential characteristics of patients with decisional conflict using bivariate and multivariable logistic regression. The overall mean age was 50.6 years, with 62% male patients and 48% African American patients. Nearly half (48.5%) of patients had decisional conflict regarding treatment options. Characteristics significantly associated with decisional conflict in multivariable analysis included male sex, lower educational attainment, and less transplant knowledge. Understanding characteristics associated with decisional conflict in patients with ESRD could help identify patients who may benefit from targeted interventions to help patients make informed, value-based, and supported decisions when deciding how to best treat their kidney disease.

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.