Practice variation in the diagnosis of acute rejection among pediatric heart transplant centers: An analysis of the pediatric heart transplant society (PHTS) registry

Godown, Justin; Cantor, Ryan S.; Koehl, Devin; Cummings, Elizabeth; Vo, Joslyn; Dodd, Debra A.; Lytrivi, Irene D.; Boyle, G.J.; Sutcliffe, D.; Kleinmahon, J.; Shih, Renata; Urschel, Simon; Das, Bibhuti B.; Carlo, Waldemar F.; Zuckerman, Warren A.; West, Shawn C.; McCulloch, Michael A.; Zinn, Matthew D.; Simpson, Kathleen E.; Kindel, Steven J.; Szmuszkovicz, Jacqueline R.; Chrisant, Maryanne; Auerbach, Scott R.; Carboni, Michael P.; Kirklin, James K.; Hsu, Daphne T.

doi:10.1016/j.healun.2021.08.002

Cited by 11 publications

(9 citation statements)

References 18 publications

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“… 28 , 29 Moreover, patients with DS have comparable rates of posttransplant infection requiring hospitalization, rejection, and PTLD as other pediatric HTx recipients. 28 , 30 , 31 , 32 , 33 , 34 , 35 Based on these data, despite historical concerns about transplant candidacy in this population, a diagnosis of DS alone does not appear to lead to inferior posttransplant outcomes and therefore should not be considered an a priori contraindication to HTx.…”

Section: Discussionmentioning

confidence: 87%

Heart Transplantation in Children With Down Syndrome

Godown

Fountain

Bansal

et al. 2022

JAHA

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Background Children with Down syndrome (DS) have a high risk of cardiac disease that may prompt consideration for heart transplantation (HTx). However, transplantation in patients with DS is rarely reported. This project aimed to collect and describe waitlist and post– HTx outcomes in children with DS. Methods and Results This is a retrospective case series of children with DS listed for HTx. Pediatric HTx centers were identified by their participation in 2 international registries with centers reporting HTx in a patient with DS providing detailed demographic, medical, surgical, and posttransplant outcome data for analysis. A total of 26 patients with DS were listed for HTx from 1992 to 2020 (median age, 8.5 years; 46% male). High‐risk or failed repair of congenital heart disease was the most common indication for transplant (N=18, 69%). A total of 23 (88%) patients survived to transplant. All transplanted patients survived to hospital discharge with a median posttransplant length of stay of 22 days. At a median posttransplant follow‐up of 2.8 years, 20 (87%) patients were alive, 2 (9%) developed posttransplant lymphoproliferative disorder, and 8 (35%) were hospitalized for infection within the first year. Waitlist and posttransplant outcomes were similar in patients with and without DS ( P =non‐significant for all). Conclusions Waitlist and post‐HTx outcomes in children with DS selected for transplant listing are comparable to pediatric HTx recipients overall. Given acceptable outcomes, the presence of DS alone should not be considered an absolute contraindication to HTx.

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Section: Discussionmentioning

confidence: 87%

Heart Transplantation in Children With Down Syndrome

Godown

Fountain

Bansal

et al. 2022

JAHA

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“…Cardiac catheterizations were also identified as a procedure leading to excessive out‐of‐pocket expenses. While the frequency of for‐cause endomyocardial biopsies is unlikely to be directly modifiable, there is enormous variability across centers in the frequency of surveillance endomyocardial biopsies 11,12 . Published data suggest that similar outcomes can be achieved with both invasive and non‐invasive surveillance approaches in pediatric heart transplant recipients 11,13,14 .…”

Section: Discussionmentioning

confidence: 99%

“…While the frequency of for‐cause endomyocardial biopsies is unlikely to be directly modifiable, there is enormous variability across centers in the frequency of surveillance endomyocardial biopsies 11,12 . Published data suggest that similar outcomes can be achieved with both invasive and non‐invasive surveillance approaches in pediatric heart transplant recipients 11,13,14 . Therefore, it may be feasible to safely reduce the number of surveillance endomyocardial biopsies.…”

Section: Discussionmentioning

confidence: 99%

Out‐of‐pocket expenses associated with pediatric heart transplantation

Kaslow

Jaworski

Crawford

et al. 2023

Pediatric Transplantation

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Introduction Heart transplantation in children is associated with high resource utilization. However, the financial burden on families and the association with patient and demographic factors remains unclear. This study aims to examine out‐of‐pocket expenses associated with pediatric heart transplantation. Methods An anonymous REDCap survey was distributed to caregivers of children who have undergone heart transplantation using social media, national organizations, and during clinic encounters from May through August 2022. Results There were a total of 146 respondents. The median monthly out‐of‐pocket expense was $250 (IQR $75–$500) and 20 respondents (13.7%) reported monthly expenses of >$1000. Families with commercial insurance reported significantly higher out‐of‐pocket expenses compared to those with government‐sponsored insurance (median $350 vs. $100, p < .001). Families with government‐sponsored insurance were most happy with their insurance coverage, followed by commercial insurance and then coverage through the Affordable Care Act (p < .001 for all pairwise comparisons). There was no statistically significant difference in overall transplant‐related out‐of‐pocket expenses based on total household income (p = .222). Monthly out‐of‐pocket expense was not associated with the number of medications, type of immunosuppressants, or post‐transplant complications including rejection, PTLD, or CAV (p = NS for all). Cardiac catheterizations and unplanned admissions were reported as the events that incurred the highest out‐of‐pocket expense. Conclusion Families of children who have undergone heart transplantation can incur significant out‐of‐pocket expenses and strategies to mitigate this financial burden should be investigated.

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“…Significant variation exists across centers in diagnosing rejection in pediatric HT recipients [6]. In addition, variable echocardiographic strategies may not be independently associated with freedom from rejection, rejection with hemodynamic compromise, or overall graft survival [7].…”

Section: Echocardiographymentioning

confidence: 99%

Multimodality Imaging to Detect Rejection, and Cardiac Allograft Vasculopathy in Pediatric Heart Transplant Recipients—An Illustrative Review

Das

Deshpande

Hussain³

2022

Transplantology

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The three most common modalities of graft surveillance in pediatric heart transplant (HT) recipients include echocardiography, coronary angiography, and endomyocardial biopsy (EMB). The survival outcomes after HT in children have improved considerably in recent years. However, allograft rejection and cardiac allograft vasculopathy remain the leading cause of death or re-transplantation. The routine surveillance by EMB and coronary angiography are invasive and risky. Newer noninvasive echocardiographic techniques, including tissue Doppler imaging (TDI), 2-D speckle tracking echocardiography, CT coronary angiography (CTCA), cardiovascular magnetic resonance (CMR), single-photon emission computed tomography (SPECT), and positron emission tomography (PET) and invasive techniques such as intravascular ultrasound (IVUS), functional flow reserve (CFR) of coronary arteries, optical coherence tomography (OCT), have emerged as powerful tools which may help early recognition of sub-clinical rejection, response to treatment, early detection, and progression of CAV. The multimodality imaging approach, including noninvasive and invasive tests, is the future for the transplanted heart to detect dysfunction, rejections, and early CAV. This review illustrates noninvasive and invasive imaging techniques currently used or could be considered for clinical use in detecting heart transplant rejection, dysfunction, and CAV in children.

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Practice variation in the diagnosis of acute rejection among pediatric heart transplant centers: An analysis of the pediatric heart transplant society (PHTS) registry

Cited by 11 publications

References 18 publications

Heart Transplantation in Children With Down Syndrome

Heart Transplantation in Children With Down Syndrome

Out‐of‐pocket expenses associated with pediatric heart transplantation

Multimodality Imaging to Detect Rejection, and Cardiac Allograft Vasculopathy in Pediatric Heart Transplant Recipients—An Illustrative Review

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