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Pediatric Transition and Transfer Guidance Document

Proposal Overview

Status: Review

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).

No other identifying information will be displayed unless you choose to display your name with the comment. You can also submit a comment anonymously. You may also submit comments by email, fax or mail.

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.
  • No spam. Repeated posting of identical or very similar content in a counter-productive manner is prohibited — this includes posts aggressively promoting services or products.

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 3 | 9/11/2018

This proposal was a non-discussion agenda item. The Region 3 vote was as follows:

12 strongly support; 12 support; 8 abstentions/neutrals; 1 opposed; 0 strongly oppose

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.

Region 2 | 9/26/2018

Non-discussion agenda:
Region 2 Vote: 8 strongly support, 24 support, 2 abstentions/neutrals, 0 oppose, 0 strongly oppose

OPTN/UNOS Patient Affairs Committee | 9/27/2018

The OPTN/UNOS Patient Affairs Committee thanks the Pediatric Transplant Committee for the opportunity to provide feedback on their guidance document regarding transitioning and transfer of pediatric recipients to adult care.

The PAC commends the Pediatric Transplant Committee for their outreach efforts to transplant centers to obtain transition and transfer best practices. They questioned why feedback was not solicited from adolescent pediatric patients, former pediatric patients who have successfully (and unsuccessfully) transitioned and the parents or caregivers of pediatric patients who successfully (or unsuccessfully) transitioned? The PAC felt additional perspectives and insight would be valuable to this resource, and suggested the Pediatric Committee conduct additional outreach.

The PAC acknowledged guidance is not policy. Programs may voluntarily implement the recommendations contained within the guidance document, but adoption is not required and thus programs will not be monitored (regarding anything recommended by the guidance document). For these reasons, the PAC felt it may be challenging to evaluate if the document is having any impact on improved data reporting or transplant recipient outcomes. Likewise, it may be challenging to attribute any change to the recommendations outlined in the guidance. They were skeptical whether it will provide any improvement in the status quo. The PAC advocated for a policy solution instead of guidance, as the potential for graft and patient longevity is so great in this population. Similarly, it seems important to improve data collection, especially pertaining to long-term outcomes, to inform future policy.

The PAC asked the following questions:
Q: What data did the Pediatrics Committee analyze to determine there is a correlation between a ‘lost to follow up’ designation and decreased long term transplant and recipient survival?
A: The Pediatrics Committee cross-referenced OPTN data sets to rule out patients who were deceased, and patients who were on dialysis to determine the cohort of patients deemed “lost to follow-up”.

Q: How did you conclude by decreasing the number of ‘lost to follow up’ transplant recipients there would be an effect on longer transplant and recipient survival?
A: They did not have access to graft function data, so they hypothesized that improving follow-up of these patients would lead to better documentation and optimizing care.

Q: The PAC noted there was not a clear communication or education plan to educate the community about this guidance.
A: The workgroup chair is working on a manuscript to call transplant programs to action regarding this topic. That is beyond the scope of OPTN efforts.

Q: The PAC looked at outcome data several years ago and noted that graft loss was highest for young adult recipients (age ~19-28). Did the Pediatric Committee look at similar data when developing this guidance?
A: The Pediatric Committee did not view outcome data for recipients, because the scope of the guidance was limited to a cohort that was lost to follow-up. So by definition, the OPTN would not have outcome data on them.

Darnell Waun | 9/27/2018

To be representative of the entire transplant population, this proposal should also include consultation with thoracic pediatric programs, not just abdominal.  It would be insightful for the sponsoring committee to consult adult programs, of all types, who have successfully transitioned pediatric recipients into their programs.  This is a very challenging issue that implicates both adult programs who approach post-transplant management from an adult model and therefore struggle with transitioning pediatric recipients into their programs and pediatric programs creating an environment to begin the transition process early instead of waiting until the recipient actually meets adult transplant criteria.  Pediatric providers many times have managed these pediatric patients for literally decades which makes it difficult for them and the family members to turn over their care to the adult environment.

Evelyn Hsu | 9/28/2018

Studies in Pediatric Liver Transplantation (SPLIT) represents over 250 members and more than 45transplant centers internationally. One of the stated missions of SPLIT is to improve outcomes for children receiving liver transplantation. We support this guidance document created by the UNOS Pediatric Committee as it is the first document of its kind created by UNOS to address the problem of transitioning adults who have received transplants as children into the adult care system. This guidance document joins existing curricula provided by the American Society of Transplantation website and leading institutions to highlight this issue as an important obstacle to the attainment of long-term graft health for pediatric organ transplant recipients.     Submitted by Evelyn Hsu on behalf of the SPLIT Council (members: Susan Feist, (UCLA) Simon Horslen (Seattle Children's Hospital) George Mazariegos (Children's Hospital Pittsburgh) Vicky Ng (SickKids Toronto), Nitika Gupta (Children's Hospital of Atlanta) Dana Mannino (Dupont) Julie Economides (Texas Children's) Saeed Mohammad (Lurie Children's) Sue Rhee (UCSF) Riccardo Superina (Lurie Children's) Beau Kelly (DCI Donor Services)

American Nephrology Nurses Association (ANNA) | 10/01/2018

ANNA supports.

Region 9 | 10/01/2018

The Region 9 vote was as follows:

8 strongly support, 10 support, 2 abstentions/neutrals, 1 oppose, 0 strongly oppose

American Society of Transplant Surgeons (ASTS) | 10/2/2018

The Pediatric Task Force of the ASTS supports the OPTN Guidance on Pediatric Transplant Recipient Transition and Transfer proposal. The transition of pediatric patients into adult transplant programs is mired with challenges that vary from the condition of the patient at the time of the transfer, type of organ transplant, geographic location and characteristics of receiving teams. Most large pediatric transplant programs do have existing processes for the transfer of their patients when they reach adulthood. Because of the circumstances during the transfer may be highly variable, a ‘one fits all’ approach may not work.
Regardless of the model used for the transfer of pediatric patients into adult programs, the Task Force identified some potential areas of improvement.
1. The emphasis has resided on the Pediatric Transplant team to arrange all the steps necessary for the transfer such as creating a teen clinic, counseling sessions with the adolescents about taking ownership of their care, counseling sessions for the parents among others; however, details of the acceptance process on the adult side has been limited. A suggestion is to get the adult team involved early in the process. In one of our institutions, the transition is staged.
Our recommendation is to have 2-4 “acceptance” clinics on site at the adult center where the “pediatric patient” is brought to the clinic by the pediatric center staff, and they attend the clinic with the pediatric patient along with the adult providers. This has been done for several years at one of our centers with good results. Also the accepting adult center should have a formal process for integrating the adolescent into their program, i.e., follow the same process as a new patient transplant evaluation.
2. An effort should be made to only transfer patients when they are stable, not during an acute illness, unless the adult team is more familiar with managing such an acute illness. An example would be a de novo hepatitis C in a teen recipient.
3. Perhaps there shouldn’t be a prescribed age cutoff when adolescent patients are transferred. We all know that teenagers reach maturity at different speeds. The heart transplant program in one of our institutions transfer patients to the adult services when their patients reach the age of 25. Perhaps at that age, patients may be more mature and therefore may be more responsible for their care, albeit we know of no current data to support this assumption.
The Task Force applauds the OPTN’s efforts to develop guidelines for transferring pediatric patients to the adult programs. The goal to decrease the rate of ‘lost to follow up’ is very important, and collecting such information is a must to design systems for better transition of adolescents into adult programs and allocate resources to make such transfer successful.

American Society of Transplantation (AST) | 10/2/2018

The American Society of Transplantation supports this proposal. Successful transition and transfer of clinical care for the young adult transplant patient from pediatric to adult caregivers is a critical driver of long-term outcomes. The Society strongly supports the goals of this document, and feel that there is an opportunity to be innovative and strategic in identifying specific best practices and potential quality metrics that could inform future policy and standards for enduring and successful transition/transfer of care. It is clear that the amount of psychosocial support that transplant recipients receive dramatically impacts early recovery post-transplant, higher quality of life metrics, better medication and follow-up care adherence, and increased overall graft and patient survival. In pediatric transplant programs, the dedicated per patient resources of individual patient/family attention, education, and redundancy of of patient safety systems is higher per patient that is typically seen in adult systems. This difference in the models of care delivery poses challenges which warrant a concerted strategic plan with programmatic accountability to gold standards of transition care that presently do not exist. The AST suggests that transfer of young adult patients from pediatric to adult providers is challenging and may be best accomplished within the framework of a formalized transition program.

Components of a transition program to be considered for inclusion and which would meet the guidance document goals include:

1. Patient and family participation in all aspects of care

2. Use of transplant care education materials. The AST's Pediatric Transition Portal is listed in your resources. Consider adding that this site includes tools and templates that were recommended in this guidance document.

3. Use of a formal readiness assessment tool that evaluates a patient's general preparedness for independent care, identifies knowledge and practice gaps, and potential threats to graft health and patient wellness, and a mechanism for addressing deficiencies.

4. Institutional process for determining the appropriate time for each maturing pediatric transplant patient to take on greater responsibility for his/her care while still having care overseen by adult caregivers and then to evenutually have care transferred to an adult provider. Factors that must be considered here are intellectual ability, prior demonstration of willingness to engage in care, and availability of adult support to oversee behavior. A standardized institutional process does not negate the need to evaluate each patient on a case-by-case basis.

5. A process for evaluating an adult transplant program's patient - specific personnel expertise, capacity, and resources for supporting a transitioning patient, within commensurate reimbursement incentive for programmatic high performance. 6. Evidence-based tools and metrics for evaluating the short, medium, and long-term effectiveness of transition to independent care beyond graft and patient survival.

The Society also offers the following comments to address 'Lost to Follow-Up' concerns cited in the guidance document: **We support efforts to reduce the incidence of 'lost to follow-up' designations for all patients, but particularly young adult transplant recipients transferred to adult providers.

The AST recognizes that there may still be untapped opportunities for OPTN/UNOS to capture longitudinal data on pediatric transplant recipients, and have the following suggestions/comments:

1.For recipients who are transition to adult transplant programs, a formal transfer of the responsibility for the TRF forms to the adult program should be made in the OPTN/UNOS records, with acknowledgment of the accepting adult program. Thereafter, accepting adult programs should be required by the OPTN/UNOS to file annual TRF updates on these patients. There should be disincentives for using the 'lost to follow-up' option unless there is no other choice.

2. For recipients who are transitioned to providers who are not affiliated with transplant programs, it must be made clear to the pediatric transplant program that the responsibility to submit the annual TRF continues to reside with the original pediatric transplant program. To improve compliance, consideration should be given to minimization of metrics to be collected (i.e. graft function and patient status - alive or dead). **In light of the generalized problems of too high 'lost to folllow-up' rates within the SRTR database and how that impacts data analyses which inform policy development, we suggest that OPTN/UNOS go beyond this guidance document which is restricted to transition of pediatric patients to adult providers and explore policy changes that would deter programs from so frequently using 'lost to follow-up' designation.

Suggestions for policy considerations include:

1. A muslidisciplinary evaluation of the transplant recipient should be made by the accepting adult program (i.e. meeting with various members of the adult transplant team) to orient to the recipient to the team identity and care process in the adult transplant program.

2. Transitions should ideally be made through a verbal discussion between the transferring provider and the accepting provider. In addition, a structured summary of records should be made that addresses important aspects in the post-transplant course of the recipient: -allograft status and complications -surgical/technical complications -immunosuppressionhistory -history of infections -medical complications -psychosocial development -immunization history

3.Transfers of TRF reporting should be formally filed with OPTN/UNOS from the pediatric transplant program, with acknowledgment from the accepting adult transplant program to avoid the gap where patients are labeled 'lost to follow-up.' There was concern regarding the recommendation that adult providers provide staff education regarding childhood and adolescent psychological development. This expertise seemed to be outside the normal realm of expertise of adult healthcare providers. In addition, there were concerns that this proposal may place increased liability on adult providers if a transferred pediatric patient did poorly due to inadequate staff education regarding psychosocial development. While there were additional resources that were provided to address some of these educational needs, further resources are needed to provide adequate staff education in this particular area. The AST also encourages the inclusion of pharmacists as members of the multidisciplinary team that is involved in transition of care in this patient population. Clinical pharmacists play an important role in transitions of care in transplant and pediatric populations. This guidance document includes a statement (p. 13, lines 113-114) that large programs use a multidisciplinary approach during transitions, but only specifies social workers and transition coordinators. We recommend inclusion of a pharmacist in this group. Clinical pharmacists practicing alongside transplant providers in pediatric settings provide regular documentation on medication use, history of immunosuppression exposure, patient's medical knowledge and attitudes towards taking medications, identify adherence issues, adverse events, and keep track of vaccination schedules. The pharmacist helps prepare the patient for transition to adult care. This includes reviewing medication schedules and indications, current insurance coverage and how that might change when switching to an adult center (including if primary pharmacy for obtaining medications will change), and identifying possible issues with compliance in the future. The pharmacist is responsible for preparing a portion of the transition report. Specific responsibilities include biopsy and immunosuppression history, vaccine history, current and past medication history use, identified issues with compliance, and current pharmacy information. Lastly, the multidisciplinary teams from both hospitals (including pharmacists) meet to verbally discuss the transition. Examples of services provided by pharmacists at the time of transition from pediatric to adult transplant clinics are noted as feedback to specific questions posed by the Pediatric Committee.

American Society for Histocompatibility and Immunogenetics (ASHI) | 10/2/2018

The American Society for Histocompatibility and Immunogenetics (ASHI) supports this proposal and is strongly in favor of policies to ease transition from pediatric to adult programs for all affected patients.  ASHI has no additional comments regarding the specific requests for feedback requests.

Society for Transplant Social Workers (STSW) | 10/2/2018

The Society for Transplant Social Workers (STSW) appreciates the opportunity to comment on the importance of improving the process by which patients are transitioned from pediatric to adult transplant care. As social workers and integral members of this process, we recognize the value in providing a multidisciplinary approach in preparing recipients for transition. The STSW acknowledges that successful transition begins early in the pediatric center (many programs start as early as age 14 years) and continues in the adult center. Particularly, the first two years post-transition are the most critical for continued long-term graft survival. The STSW supports the tasks identified for both Pediatric Transplant Teams and the Accepting Adult Providers as a guideline for centers to follow in improving communication with the recipients as well as the referring pediatric centers. The STSW agrees that successful transition plays a major role in successful long-term graft survival into and past early adulthood.

American Society of Pediatric Nephrology (ASPN) | 10/2/2018

The American Society of Pediatric Nephrology (ASPN) strongly supports the commitment to developing and implementing a transition process for pediatric kidney transplant patients to adult providers. This issue is of critical importance to the pediatric community and we commend the UNOS Pediatric Committee for their comprehensive proposal aimed at improving the outcomes of our patients. We agree with the executive summary statement and the concerns of increased risks for graft loss in transitioning patients due to non-adherence. We agree with the need to reduce the number of lost to follow up designations for pediatric transplant recipients, to allow improved data collection and patient outcomes for this select population. Below please find our feedback and responses to the questions posed within the proposal.

We greatly appreciate the Committee's interests in our experience in this area:

1. The use of transition readiness tools have been helpful in facilitating successful transitions. It may be beneficial for the proposal to provide gold-standard or recommended measures that are empirically supported.

2. A multidisciplinary approach has enhanced success in transition. Ideally, a transition clinic should be comprised of nephrologists, psychologist, dietician, social work, and the family. The document provides the developmental milestones and appropriate expectations, but it could elaborate on patient's (and family's) ability to manage the tasks required and what support systems/interventions can be provided to address them.

3. Patient transition is often dictated by insurance payment and coverage. Insurance companies can refer the 18+ patients to adult nephrologists in their network and deny authorization for seeing a pediatric specialist, thus preventing an extended transition period. Identifying insurance requirements and plans and transfer plans may need to be addressed on an ongoing basis in part of the transition planning. Ability to maintain insurance coverage needs to be one of the critical milestones. Most insurances require ongoing certification. Lack of certification may result in lapse of coverage which may jeopardize the transition process.

4. We fully agree with the importance of establishing partnerships with adult providers well in advance of transfer. In practice, we feel this if often the most difficult aspect, since many adult programs may not have the staffing or commitment to partner with a pediatric program to assist in transfer of a small number of patients. The transitioning patient is also in the process of transferring general care and this often becomes the barrier to follow up. Establishing a new primary care provider, getting the appropriate referrals and getting care from a generalist as opposed to the pediatric nephrologist often leads to patient confusion and lack of follow up. In addition, many pediatric transplant recipients are followed by multiple specialists (due to their underlying medical diagnosis and concurrent conditions) and establishing care with multiple providers in the adult systems is often very complicated for a family.

5. Patient's mental health care needs have to be considered. Difficult transitions have been with patient with mental health difficulties including mood disorders, ADHD, and substance use disorders. It may be beneficial to recommend routine screening for emotional/behavioral health and provide appropriate services (or referrals for services) to address these problems.

6. The responsibility of submitting TRF forms can sometimes result in an undue burden to the pediatric transplant program. It would helpful to include details in the guidelines to outline that a patient who transfers to an unaffiliated adult provider also get transferred to the local adult transplant program so that the burden of follow up is not left with the pediatric provider. There should be guidelines for adult providers (both transplant and non-transplant nephrologist) with education, so that data submission is a shared responsibility between the transferring institutions.     

Examples of successful transfer practices form our membership:  • Our transition clinic happens at our pediatric center and the adult care team visits the patient and care giver on site. The RN, MD and other adult transplant team members introduce themselves and explain their roles and how it differs from the pediatric model. This is helpful to fully clarify roles and set expectations for the new model of care. A document is created summarizing the diagnosis and history as it frequently spans years. After the transition an appointment is set up with the pediatric provider once shortly after to check in and help clarify any areas of concern and encourage success of the transition.  • A transition clinic or a clinic geared to the young adult (18-30 y) or a designated staff member as opposed to having patients seen with the general adult population.   • We have seen the benefit when the adult physician provider team develops a written heath care policy for receiving pediatric transplant recipients to assist them in navigating the adult system (comparable to the pediatric transplant program).

Region 11 | 10/2/2018

Region 11 Vote: 8 strongly support, 14 support, 1 abstentions/neutrals, 0 oppose, 0 strongly oppose

Elizabeth Rubinstein | 10/3/2018

As part of a sub-committee reporting to the parent UNOS PAC Committee in evaluating the Pancreas Program Functional Inactivity policy proposal, the OPTN/UNOS Patient Affairs Committee 9/26/2018 public comment posting reflects our evaluation of the proposal. A more detailed evaluation was provided directly to the Pancreas committee and we appreciated the acknowledgement of the validity of our comments from a patient perspective and careful considerations of the committee suggestions and addressing our supplemental questions. This swayed support from a non-support position on my behalf to a potential support approval with these considerations in play after our review submittal. Upon attending the Region 10 meeting and observing strong support for the proposal, I was struck that the support came from an institutional perspective and did not take into consideration the patient perspective considering that over 50% of the patients displaced by a program declared as functionally inactive did not relist. This may be due to several unrelated factors but this is telling in many ways of a lack of communication and follow up throughout the entire listing process at a center. The proposal does protect patient safety if in reality patients did relist at a functionally active center where waitlist time was reduced and competent medical outcomes were validated within a higher volume center. With this in mind as primary, I supported the proposal at the regional meeting.

Region 6 | 10/3/2018

Region 6 Vote on non-discussion agenda items: 26 strongly support, 17 support, 1 abstentions/neutrals, 1 oppose, 0 strongly oppose

Region 7 | 10/3/2018

Region 7 Vote on non-discussion agenda items: 11 strongly support, 11 support, 5 abstentions/neutrals, 0 oppose, 0 strongly oppose

National Kidney Foundation (NKF) | 10/3/2018

The National Kidney Foundation appreciates the issuing of this guidance to highlight best practices in assisting pediatric patients to adult post-transplant care. This is a persistent challenge for young adults who are also going through many life changes on top of the need to manage their own medical care. There are many best practices in this guidance that if implemented are likely to make this transition easier on young adults, such as having a multidisciplinary transition team, teaching young adults to be self- advocates, and assessing transition readiness rather than a required hand-off at age 18. 

The National Kidney Foundation recommends that UNOS also conduct a webinar series for transplant programs to share successful strategies with others. We recommend including  patient perspectives in this series and have members of our Kidney Advocacy Committee who would be willing to share their stories and experiences as part of this series. 

OPTN/UNOS Ethics Committee | 10/3/2018

The OPTN/UNOS Ethics Committee commends the OPTN/UNOS Pediatric Transplantation Committee’s efforts to provide resources describing effective transition and transfer practices. The Ethics Committee offers its consensus support for this guidance. 

The Ethics Committee’s views were informed by the Pediatric Transplantation Committee presentation on the proposal in August 2018. Ethics Committee members asked questions about and discussed authority during transfer between parent-to-patient. In addition, Ethics Committee members encouraged the Pediatric Transplantation Committee to consider cultural differences with regard to independence and self-responsibility, as many cultures depend on families for decision-making and thought should be given to the possibility of isolating recipients from their families. The Ethics Committee considered the dialogue and concluded that the guidance is an important step to creating increasingly effective transfers.

The Ethics Committees thanks the Pediatric Transplantation Committee for presenting to the Ethics Committee members and its work on this guidance.

OPTN/UNOS Transplant Coordinator Committee | 10/3/2018

Tracking Pediatric Transplant Outcomes Following Transition to Adult Transplant Programs
The OPTN/UNOS Transplant Coordinator Committee thanks the Pediatric Transplant Committee for the opportunity to provide feedback on their guidance document regarding transitioning and transfer of pediatric recipients to adult care.

The TCC supports the intent of this guidance, however, there needs to be consideration for a coordinator’s time, and reimbursement. The extra time and care provided to transitioning patients is not reimbursable. Although pediatric programs are likely very supportive of these recommendations, this is still a concern, and likely more so on the adult side. Therefore, the TCC might support a policy initiative, should that be proposed in the future.

Members shared practices from their institutions. One member shared that patients are encouraged to use the patient portal/MyChart to get them use to their medical information. In addition, a patient advocate for transitioning pediatric patients was suggested (i.e. dedicated social worker or coordinator). Another member shared they had a dedicated adult coordinator who handled transfers from the pediatric abdominal program. That staff member would brief adult provider staff on upcoming transfers, and has proven to be an effective practice. This institution also has the adult coordinator attend the last pediatric appointment, and has the pediatric coordinator attend the first adult program appointment.

Dawn Freiberger | 10/3/2018

I am on the pediatric side of things, but communication from the adult hospital back to the  pediatric hospital after the transfer is crucial.  Patients need to know that medical information from providers who have known the patient for years is being communicated.  I  think this is one of the most difficult things to do.  How much communication is enough and how much is too little? Specific guidance on this issue would be appreciated. It is important that the pediatric providers are used as a resource but the patient also needs to gain confidence in the new providers.  Adult providers need more education on the transition process and understand that transition does not stop just because they are in the adult center.

Marc Schecter | 10/3/2018

Capturing this data will be useful to assess how pediatric centers are doing after transferred to an adult center.

Region 1 | 10/3/2018

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

Region 10 | 10/3/2018

Region 10 Vote: 10 strongly support, 12 support, 2 abstentions/neutrals, 1 oppose, 2 strongly oppose

OPTN/UNOS Thoracic Committee | 10/3/2018

The OPTN/UNOS Thoracic Committee thanks the Pediatric Transplant Committee for the opportunity to provide feedback on their guidance document regarding transitioning and transfer of pediatric recipients to adult care. The group felt that generally, they have not had issues with transfer or transition, possibly because pediatric heart recipients are generally referred to an adult transplant program, versus a community provider. However, if a recipient only has access to a non-transplant cardiologist, members acknowledged challenges in keeping tabs on them and communication with the non-transplant provider. It makes it more challenging to catch indicators of rejection, or other adverse event, in a timely manner.

Some members opined that pediatric programs retain their patients for a long period of time, sometimes into their early 20’s. Other members, especially those affiliated with a pediatric transplant program, acknowledged patients used to be referred to the adult program much later, but that has improved. Several members shared practices from their own program, including coordinator handoff processes, transition clinics and mentoring programs. One member suggested collecting information about underlying diseases for early diagnoses.

The following questions were asked and answered to the satisfaction of the committee:
Q: Was data for thoracic patients reviewed?
A: The presenter confirmed it was, and that there was a low lost to follow-up for thoracic organ recipients, because they typically stay within the transplant system.

Q: Did the Pediatric Committee survey adult providers on best practices?
A: No, they are seeking best practices from adult programs via public comment.

The Society of Thoracic Surgeons (STS) | 10/3/2018

Background
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. As a result of transplant hospitals sharing effective practices for recipient transition and transfer from pediatric to adult medical care, transplant outcomes data will be more complete and more representative of clinical practices. Accurate and complete long-term post-transplant survival data are vital to understanding outcomes for all pediatric transplant recipients and to the development of health care policy that facilitates improvement of these outcomes.

General Comments
STS supports, in principle, the proposal to provide guidelines for transferring a patient from a pediatric transplant center to another provider as that person transitions to adult age, with the goal of reducing patients lost to follow-up and potentially improving compliance and survival. STS believes these recommended guidelines represent a reasonable standard to help ensure optimal transition of pediatric patients to adult care providers. STS also believes that further data should be obtained on the impact of proposed changes on transplant providers’ existing workload.

We appreciate the opportunity to comment on these proposals and would welcome the opportunity to serve as a resource to OPTN/UNOS as it continues its work on these important issues. Please contact Courtney Yohe, STS Director of Government Relations, at cyohe@sts.org or 202-787-1230 should you need additional information or clarification.

Sincerely,
Keith S. Naunheim, MD
President