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Pediatric heart transplant waitlist mortality remains significant but allograft offer refusals are common and allografts continue to be discarded. Our aim in this study was to assess the impact of donor organ refusals on mortality after listing using a multi-institutional data set.In this study we conducted a retrospective review of donor offers made to pediatric (18 years) recipients in the United States in the period from 2007 to 2017. Candidates were stratified by whether they refused an acceptable donor offer (ADO). Acceptance was defined as an offer from a donor40 years old and within 1,000 miles that was ultimately accepted by a waitlist candidate. Candidate survival after an offer was assessed.There were 12,447 hearts offered at least once to a pediatric candidate. Most candidates (n = 4,282, 84.4%) refused the first offer, and 677 (15.4%) of these subsequently died or were removed from the list for deterioration. Refusal of an ADO was associated with higher mortality after listing, independent of transplant, in both univariate (1 year: 92% vs 87%, p = 0.002) and multivariate (hazard ratio 1.5, 95% CI 1.2 to 1.7, p0.0001) Cox regression analyses. ADO refusals were not correlated with improved post-transplant survival and8 ADO refusals was associated with higher risk-adjusted post-transplant mortality (odds ratio 1.7, 95% confidence interval 1.0 to 2.9, p = 0.04).Refusal of ADOs is associated with higher risk-adjusted mortality after listing (independent of transplantation), without improvement in post-transplant outcomes. So, although a "perfect" organ would be ideal, acceptance of one that is "good enough" has the potential to improve survival among pediatric candidates for heart transplantation.

Purpose Mental health disorders have deleterious effects on outcomes in adult heart failure. Mental health is not systematically investigated or screened in pediatric heart failure and transplantation patients. Methods Our institution implemented universal mental health screening for all patients age 11 or older in our pediatric heart failure and transplant clinic. 17 items are answered on a tablet while the patient awaits cardiac testing. Validated mental health screening tools are utilized: the Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder scale (GAD-7). Scores for both scales range from 0-4 = no symptoms, 5-9 = mild symptoms, 10-14 = moderate symptoms, > 15 = severe symptoms. Scores are immediately available in the electronic health record. The presence of suicidal ideation, severe depression and/or anxiety leads to notification of the psychologist for further intervention. Results 94 patients have been screened to date. Median age was 16.25 years (IQR 14.7-18.4). Median PHQ-9 score was 2 (IQR 0-6) and 2 (IQR 0-5.3) for GAD-7. Four patients (4.3%) reported severe depression, 8 (8.5%) moderate depression, 15 (16%) mild, 67 (71.3%) reported no depressive symptoms. Seven patients reported suicidal ideation (7.5%). Six patients (6.4%) reported severe anxiety, 8 (8.5%) moderate anxiety, 14 (14.9%) mild anxiety and 66 (70.2%) reported no anxiety. There were no differences in mental health scores between heart failure and transplant patients (Table 1). Eighteen new behavioral health interventions were implemented due to screening. Conclusion Electronic mental health screening can successfully be employed in pediatric heart failure and transplant clinics. A significant portion have moderate to severe anxiety (14.9%) or moderate to severe depression (12.8%). Mental health screening has led to many behavioral health interventions in this population. Our initial experience supports the use of mental health screening in a pediatric heart failure and transplant clinic.

Purpose Geographic variation in donation rates, transplant rates, and post-transplant outcomes in solid organ transplantation is well-described. We sought to test the hypothesis that organ refusal rates vary across regions and are associated with worse survival. Methods Retrospective review of the UNOS dataset (including the potential transplant recipients list which lists all offers of organs ultimately accepted for transplant) identified 5,639 pediatric ( heart transplant 2007-2017. Patients were stratified based on the UNOS region of listing. There were 12,447 donor hearts ( Results Regional refusal rates varied:73.5% to 93.1% (Table). Higher rates correlated with a lower likelihood of transplantation (r=0.60, p=0.048), higher waitlist mortality (r=0.67,p=0.008), a higher incidence of delisting for death or deterioration (r=0.61, p=0.04), higher mortality within 1 year of listing independent of transplant (r=0.080, p=0.003; see Figure), and higher 1 year post-transplant mortality (r=0.82, 0.002). Regional refusal rates were not correlated with mean regional wait times, or the number of donors available for each listed candidate. Conclusion Donor refusals rates vary widely between UNOS regions. Regions with high refusal rates also have poor outcomes following listing and transplantation.

Purpose Approximately 40% of potential pediatric heart donations go unused, while waitlist mortality remains high. The aim of our study was to investigate associations between center refusal rate and waitlist outcomes. Methods Retrospective analysis was performed using UNOS/OPTN pediatric ( Results 5,639 listed patients in 59 centers met inclusion criteria. The lowest quartile of center had a median RR of 75th percentile had a RR ≥ 4. There was no association between RR quartile and transplant center volume (p=0.4). Centers in the highest RR quartile were more likely to remove patients from the waitlist due to death or clinical deterioration versus those at lowest RR quartile (24.1% vs 14.6%, p Conclusion Patients listed at high RR centers had worse survival from listing. High RR centers are more likely to remove patients from the waitlist due to death or clinical deterioration and are less likely to transplant patients. Refusal rate is not associated with center transplant volume.

Purpose Lack of standardization in organ donation acceptance can contribute to an increased donor refusal rate, which may impact waitlist (WL) time, morbidity, mortality and transplant rates. After a review of relevant data, in 9/2017, our center developed and implemented a standardized donor acceptance criteria. We hypothesized that standardization would result in a decrease in WL time and improved WL outcomes. Methods We performed a single center, retrospective analysis of all pediatric ( Results Of 78 listed, 54 were transplanted, 8 removed due to death/clinical deterioration, 16 removed to due clinical improvement. Patient characteristics were similar between the groups (Table 1). Difference in removal from the WL for death or deterioration in Group 2 vs. 1 (n=2, 7% vs. n=6, 17%, p=0.28) did not reach statistical significance. WL time was significantly shorter in Group 2 (17 days, IQR 6-55) vs. Group 1 (90, IQR 13-167; p=0.006). The median DOR was lower in Group 2 (2, IQR 0-3) vs. Group 1 (4, IQR 2-20; p=0.001). The percentage of DOR with LVEF > 55% was lower in Group 2 vs. Group 1 (53% vs. 84%, p=0.001). Post-transplant outcomes were similar between groups (table 1). Conclusion DOR and WL time significantly decreased after a standardized donor acceptance criteria. This analysis supports the need for a standardized approach to donor organ acceptance within a pediatric transplant center.