Sponsoring Committee: Pediatric Transplantation
Strategic Goal: Improve waitlisted patient, living donor, and transplant recipient outcomes
Read the board-approved guidance (PDF; 12/2018)
View the board briefing paper (PDF; 12/2018)
Proposal executive summary
Suboptimal transition and transfer processes for pediatric transplant recipients have been associated with increased risk of non-adherence with their plan of care and graft loss. Breakdowns in transition and the transfer to adult medical care may contribute to “lost to follow-up” designations for pediatric transplant recipients on OPTN data collection forms. The goal of the guidance is to support improvements in transplant outcomes by reducing instances of graft loss from non-adherence, and by providing guidance to transplant hospitals to improve the transition and transfer process for pediatric recipients. A secondary goal of this guidance is to reduce the incidence of lost to follow-up designations for pediatric transplant recipients. By sharing effective practices for recipient transition and transfer from pediatric to adult medical care, transplant outcome data will be more complete and more representative of clinical practices.
This guidance aligns with the goals of the OPTN Strategic Plan to improve waitlisted patient, living donor, and transplant recipient outcomes. Long term post-transplant survival data are vital to understanding outcomes for all pediatric transplant recipients and developing healthcare policy to improve these outcomes.
Read the proposal (PDF - 405 K; 8/2018
The Committee encourages all interested individuals to comment on the proposal in its entirety. The Committee requests feedback on the following items:
- Clinical staff in adult medical care are key stakeholders in the transition and transfer process. Staff members who receive recipients from pediatric transplant programs are encouraged to share feedback on their transfer experiences.
- In what ways are recipients (transplanted before 18 years old) well prepared or ill prepared for transfer to adult medical care?
- Is there specific information about the recipient, or specific transfer practices that have led to an optimal hand-off from a pediatric program to your program?
- What practices help you share the recipient’s health information back to the pediatric transplant program for OPTN data submission?
- Recipient transfer scenarios may not fit neatly into the three types profiled in the guidance document.
- Do you currently use, or have you considered, any non-conventional models of transfer to adult medical care, e.g.: transfer routine medical care to a provider not affiliated with a transplant hospital (perhaps nearby to the recipient’s place of residence) and arrange for periodic outpatient evaluations with a transplant program outside your institution?