The Development of the International Intestinal Failure Registry and an Overview of its Results.

Pediatric intestinal failure (IF) is a rare disease that represents an evolving field in pediatric gastroenterology and surgery. With only a limited number of multicenter collaborations, much of the research in pediatric IF is often confined to single-center reports with small sample sizes. This has resulted in challenges in data interpretation and left many knowledge gaps unanswered. Over the past two decades, five large multicenter collaborations, primarily from North America and Europe, have published their findings. Apart from one ongoing European adult and pediatric registry, these relatively large-scale efforts have been concluded.In 2018, the International Intestinal Failure Registry (IIFR) was initiated by the International Intestinal Rehabilitation and Transplant Association to continue these efforts and answer some of the knowledge gaps in pediatric IF. The IIFR goals are to prospectively assess the natural history of children diagnosed with IF and creating a worldwide platform to facilitate benchmarking and evidence-based interventions in pediatric IF. A pilot phase involving 204 enrolled patients was initiated in 2018 to assess the feasibility of an international IF registry and refine the study protocol and data collection forms. Following the successful completion of this phase, the current phase of the IIFR was launched in 2021. As of May 2023, the registry includes 362 prospectively followed children from 26 centers worldwide. This review provides an overview of the development, structure, and challenges of the IIFR, as well as the main findings from both the pilot and current phase.

Center use of technical variant grafts varies widely and impacts pediatric liver transplant waitlist and recipient outcomes in the United States.

To assess the impact of technical variant grafts (TVGs) [including living donor (LD) and deceased donor split/partial grafts] on waitlist (WL) and transplant outcomes for pediatric liver transplant (LT) candidates, we performed a retrospective analysis of Organ Procurement and Transplantation Network (OPTN) data on first-time LT or liver-kidney pediatric candidates listed at centers that performed >10 LTs during the study period, 2004-2020. Center variance was plotted for LT volume, TVG usage, and survival. A composite center metric of TVG usage and WL mortality was developed to demonstrate the existing variation and potential for improvement. Sixty-four centers performed 7842 LTs; 657 children died on the WL. Proportions of WL mortality by center ranged from 0% to 31% and those of TVG usage from 0% to 76%. Higher TVG usage, from deceased donor or LD, independently or in combination, significantly correlated with lower WL mortality. In multivariable analyses, death from listing was significantly lower with increased center TVG usage (HR = 0.611, CI: 0.40-0.92) and LT volume (HR = 0.995, CI: 0.99-1.0). Recipients of LD transplants (HR = 0.637, CI: 0.51-0.79) had significantly increased survival from transplant compared with other graft types, and recipients of deceased donor TVGs (HR = 1.066, CI: 0.93-1.22) had statistically similar outcomes compared with whole graft recipients. Increased TVG utilization may decrease WL mortality in the US. Hence, policy and training to increase TVG usage, availability, and expertise are critical.

Mobile Application for Communication Increases the Efficiency of Organ Procurement and Transplantation.

BACKGROUND: Donor organ recovery is a complex process involving organ procurement organizations and multiple surgical teams from various transplant centers. Nearly 30% of discarded organs are wasted due to reasons related to improper coordination and communication. PROBLEM STATEMENT: Lack of real-time communication results in many hours of preventable delay between procurement and transplant teams resulting in the high volume of organ waste, clinical frustration, and critical delays. METHODS: A Plan-Do-Study-Act performance improvement methodology was utilized to design and implement a dedicated mobile communication application (app). Critical time points in the organ offer, procurement, and transplant processes were analyzed from the Report of Organ Offers, and relation coordination metrics were measured. PROCESSES ADDRESSED: Members of procurement and transplant teams in Iowa were interviewed and a dedicated smartphone application was implemented to replace phone calls, e-mails, faxes, and text messages during upcoming kidney offers from July 31, 2017 to July 31, 2018. OUTCOMES: Teams reported a substantial increase in clinical productivity and case progress awareness, including a noteworthy reduction in phone calls. The relational coordination data indicated substantially higher relationship and communication quality with the app. The Report of Organ Offer data revealed a 35% increase in organs transplanted and a 50% reduction in time from initial organ offer to transplant with the use of the mobile application. IMPLICATIONS FOR PRACTICE: The use of a dedicated communication application reduces clinical frustration and delays during the coordination of organ offer, procurement, and transplant. Technologies that improve communication have the potential to improve organ utilization.