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Pediatric Transition and Transfer Guidance Document

Proposal Overview

Status: Public Comment

Sponsoring Committee: Pediatric Transplantation

Strategic Goal 3: Improve waitlisted patient, living donor, and transplant recipient outcomes

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)

Contact: Christopher Wholley

Specific feedback

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.
    1. In what ways are recipients (transplanted before 18 years old) well prepared or ill prepared for transfer to adult medical care?
    2. 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?
    3. 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.
    1. 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?

Please use this form to provide your feedback. Your comments relating to the proposal will be displayed in the comment section below (within 24 hours).

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IMPORTANT RULES ABOUT COMMENTING

To maintain a respectful dialogue, please review the OPTN Standards for Public Comment and also follow the guidelines below that were adapted from the HHS Comment Policy. Comments that violate these rules will not be published.

  • Stay focused. All viewpoints are welcome but comments should remain relevant to the specific proposal being addressed.
  • Be respectful. Personal attacks, profanity, and aggressive behavior are prohibited. Instigating arguments in a disrespectful way is also prohibited.
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Julia Steinke | 8/7/2018

We have formalized our transition process so that patients are transitioned at age 21 or 3 years after the transplant (whichever occurs earlier). We have begun to conduct transition readiness assessments at regular intervals beginning at age 12 to ensure the patient is engaged in their own health care and is aware of their past medical history and current medication regimen. As part of this process, we also perform transition readiness assessments with the parents so that they can help prepare there adolescent an assuming more autonomy with their care. We have found that the transition tools provided on the American Society of Transplant website to be particularly helpful and would recommend other Pediatric Center he has used this same tool. During the final period of transition to adult medicine, we provide the patient with a Manila envelope containing a summary letter of there medical course which would include (1) initial reason for transplant and whether not they have a history of dialysis prior to transplant (2) type of transplant and whether not they have received more than 1 transplant (3) HLA typing (4) history of rejection (5) copies of reports of any biopsies performed (6) complications of transplant or comorbidities such as posttransplant diabetes or hypertension or posttransplant lymphoproliferative disease.

Randee Bloom | 8/18/2018

Thanks for considering the unique needs of transplant recipients, such as those maturing into adulthood following a successful pediatric-aged organ transplant. As a past pediatric nurse and now organ transplant advocate (including OPTN/UNOS Board Member) I strongly support this effort to acknowledge the importance of careful and expert transition of care. Based upon the thoughtful recommendations outlined in this proposal, I believe that additional OPTN Strategic Plan goals will be positively affected. The demonstration of respect for donated organs, herein with the concern for long-term quality follow-up clinical care, may contribute to increasing consideration for donation, thereby increasing the number of available gifted organs.

Rene Romero | 9/3/2018

In light of the real expectation that pediatric transplant recipients will survive into adulthood, the 'Guidance on Pediatric Transplant Recipient Transition and Transfer' is a useful tool that identifies major actions items that should be undertaken early on in Pediatric Transplant Programs. It is a useful 'checklist' against which Pediatric Transplant Programs and their adult medical partners can begin to approach, develop, or gauge progress in this very important subject area.  The specific techniques by which the items identified in the guidance are achieved may vary significantly from one institution or another or even more likely, from one type of organ transplant to another even within an institution, but the general themes identified are broadly applicable. The very laudable goal of ensuring fully capturing long term patient outcome of pediatric transplants is critically important. It is the only way to learn how to improve.   A major impediment in the transfer of patients from pediatric to adult transplant programs is the lack of a common or sharable EMR platform. This is a common obstacle even within a single institution between its pediatric and adult providers.  Patients suffer as a result due to the loss of medical information. Additionally the transplant community loses the continuity of reporting tools built into many of the EMR platforms. There is a need to develop appropriate solutions to provide key transmission of these data elements between pediatric and adult systems. Short of that, the recommendation of providing portable, concise electronic summaries, with key source documents, is a responsibility of all pediatric programs as part of patient transfers.   In my own center's experience, Multidisciplinary Post-transplant Transition Clinics have been useful tools in preparing patients for transfer to our adult counterparts. The fact that our surgical leadership is shared across pediatric and adult centers in my institution is beneficial.  It has been the development and identification of specific medical leadership in both the pediatric and adult transplant programs however, that has been vital to establishing lines of communication between programs so that patients can be more prepared for transfer and be more successful young adult transplant recipients.  To this end, the establishment of co-attended pediatric and adult 'Transfer Clinics' has been very important for our liver programs. A major limitation is that such clinics remain in large part, administratively supported. There is a need to establish a financial model for these types of clinics that has additional support from commercial, philanthropic, and/or governmental sources to be truly successful.

Region 8 | 9/12/2018

This proposal was a non-discussion agenda item. The Region 8 vote was as follows:

11 strongly support; 3 abstentions/neutrals; 0 opposed; 0 strongly oppose

Region 5 | 9/14/2018

The Region 5 vote was as follows:

11 strongly support; 18 support; 4 abstentions/neutrals; 0 opposed; 1 strongly oppose

Region 1 | 9/17/2018

Region 1 Vote: 4 strongly support, 8 support, 1 abstentions/neutrals, 0 oppose, 0 strongly oppose

Erica Kuchinski | 9/20/2018

As a patient who had her first transplant at age 17 and now my second a age 48, I was one of those patients who went from a pediatric hospital (Children's in DC)  to adult care (U of Penn) when I had to go off to college 4 mos after my transplant. I was successful, but not due to any program or special care from the institution. The experience was a bit jarring. I went from an institution that had more patient centered care, where I always saw my doctor to a veritable cattle call where I saw whatever resident or fellow who was covering clinic day. They lined us up for blood pressure, then weight, then labs. Incredibly impersonal...and it wasn't so great. I learned early that I had to be an advocate for my care. After college when I moved to another clinic (U of MD), I asked to see my doctor outside of clinic....in an attempt to not be caught up in the cattle call and to get closer to a more organized, personal interaction where I saw the same doctor every time.....my doctor. This is probably a critical success factor. Everyone needs an anchor in a storm.