IPTA Newsletter - June 2018

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The International Pediatric Transplant Association (IPTA) is a professional organization of individuals in the field of pediatric transplantation. The purpose of the Association is to advance the science and practice of pediatric transplantation worldwide in order to improve the health of all children who require such treatment. The Association is dedicated to promoting technical and scientific advances in pediatric transplantation and to advocating for the rights of all children who need transplantation.

Our Goals...

  1. Promote the advancement of the science and practice of transplantation in children worldwide
  2. Promote research and provide a forum that highlights the most recent advances in clinical and basic sciences related to pediatric transplantation
  3. Serve as a unified voice for the special needs of pediatric transplant recipients
  4. Develop educational programs for pediatric transplant professionals in underserved regions of the world that enable children to have access to transplantation globally
  5. Become the international leader in generating and disseminating information in the field of pediatric transplantation through the publication of our journal, Pediatric Transplantation
Who is IPTA?
President: Anne I. Dipchand, Toronto, Canada
President-Elect: Mignon McCulloch, Cape Town, South Africa
Secretary Treasurer: Carlos Esquivel, Stanford, USA
Past President: Burkhard Tönshoff, Heidelberg, Germany

Stephen Alexander, Sydney, Australia
David Briscoe, Boston, USA
Alan Langnas, Omaha, USA
Debra Lefkowitz, Philadelphia, USA
Stephen Marks, London, UK
George Mazariegos, Pittsburgh, USA
Lars Pape, Hannover, Germany
Klara Posfay-Barbe, Geneva, Switzerland
Katherine Twombley, Charleston, USA

Journal Editors:
Sharon Bartosh, Madison, USA
Burkhard Tönshoff, Heidelberg, Germany

Committee Chairs:
Michael Green, Pittsburgh, USA (Infectious Disease)
Jonathan Johnson, Rochester, USA (Publications and Communications)
Kenneth Brayman, Charlottesville, USA (Publications and Communications)
Louise Bannister, Toronto, Canada (Allied Health Professionals)
Beverly Kosmach-Park, Pittsburgh, USA (Allied Health Professionals)
Katherine Twombley, Charleston, USA (Membership)
Tom Blydt-Hansen, Vancouver, Canada (Outreach)
Rohit Kohli, Los Angeles, USA (Education)
Richard Trompeter, London, UK (Ethics)
You Can Make A Difference!

Dear IPTA Colleagues,

The Publications and Communications Committee is happy to announce a new Peer Mentoring initiative. The overarching goal of this new initiative is to facilitate and improve the quality of publications being sent by our membership to transplant journals, especially Pediatric Transplantation. One means of achieving this goal is to assist our membership, especially junior faculty and faculty from emerging transplant communities, in manuscript preparation. This will allow for these members to have dialogue with those experienced in the publication process prior to final submission.

We are seeking interested individuals who would be willing to help out with this new initiative. Responsibilities would include providing reviewer style feedback to the mentee prior to manuscript submission, and being available for subsequent questions. All members, including non-physician members, are encouraged to participate.

If interested, please send your name, email, and any specific areas of research focus to peermentor@iptaonline.org.

Thank you in advance for your support,

Peer Mentoring Workgroup, IPTA
Chesney Castleberry, Workgroup Leader

The Ethics Case Series offers an open forum to share those cases we find ethically challenging in our own practice with the broader membership of our association. We would like to invite the membership of IPTA to assist us by submitting their own cases for inclusion in the IPTA newsletter’s Ethics Case Series to inform these discussions At this time there is no standardized format for submission, although we ask that you share your own insights into the cases you share. Please send your cases and thoughts about those cases to MFreeman3@pennstatehealth.psu.edu for consideration.

Michael Freeman, MD, MA (Bioethics)
Member, IPTA Ethics Committee

Ethics Case

A 12 year old male with a history of familial Hemophagocytic Lymphohistiocytosis (HLH), an immune deficiency disorder, was treated with an unmatched bone marrow transplant as an infant. Unfortunately, he developed graft vs. host disease (GVHD) after the bone marrow transplant, resulting in severe and progressive interstitial lung disease secondary to GVHD.

The parents pursued different treatment options for their son’s lung disease. He was ultimately listed for lung transplant. He had been relatively stable while listed, attending school 2 days/week. He was a very social boy and had many friends at school. He had an excellent understanding of his medical condition, a good sense of humor and overall social and cooperative demeanor. Parents were proactive and attentive and had the support of extended family that had assisted with both practical and emotional support over the years.

The patient also has mild gut and skin GVHD, GERD, seasonal allergies, nutritional insufficiency s/p G-Tube, chronic hypoxemia on 3-4L NC at baseline, and recurrent pneumothoraxes. He was admitted to the hospital in the setting of left sided pneumothorax s/p chest tube placement that was slow to resolve. The CT chest showed severe parenchymal and pleural fibrosis and several blebs, which put him at risk for further pneumothoraxes. The chest tube had an intermittent air leak, concerning for a possible bronchopleural fistula.

The patient's lung allocation score was > 50 when he was listed. Lung allocation scores range from 0-100, based on lab values, test results and disease diagnosis. There was no evidence of other organ dysfunction. Initially, he was ambulatory and hopeful. Since his score was quite high, it was hoped that he would receive lungs fairly quickly.

As the months passed, he remained on the waiting list and began experiencing significant, almost constant, coughing and dyspnea. A tracheostomy was placed as a bridge to transplant. He had difficulties in communicating easily after the tracheostomy and was frequently tearful, stating that he had been doing everything that the team had said and was not getting better. He had become increasingly frustrated with his prolonged hospitalization and need for more invasive procedures.

In the meantime, there was increased concern that his pleural disease has progressed to the point of making him a poor transplant candidate. His surgical risks were now much greater than in the past few months and the potential benefit had greatly decreased. It was felt that he would not survive transplant due to excessive bleeding. A team meeting was held and the decision was made to remove him from the lung transplant list.

When the team met with the parents about their son’s removal from the transplant list, the parents became very agitated and frustrated. The parents decided not to let their son know that he had been removed from the transplant list. They believed he would lose all hope if he learned that he is not listed. The parents were praying for a miracle. The team felt conflicted that the patient did not know that he had been taken off the list. However, the parent’s wishes were respected. He was discharged to a hospital closer to his home with a plan to limit interventions that would cause further discomfort. Symptom management was put into place to reduce his anxiety. He died 2 weeks later.

Ethics issues and challenges:


Truthfulness and honesty: In the United States, patients under 18 years of age are considered minors. Before treating a patient less than 18 years of age, parents or legal guardians must sign consent to treatment. In decision making, parents are able to make decisions on behalf of their child, if they are less than 18 years old. In this case, should we honor the parents’ wishes, given that the patient had an excellent understanding of his medical condition? Does the decision of nondisclosure compromise values of transparency and respect for the patient (Bestor et al., 2018)?

Benefit of harm? The parents wanted to protect their son from the devastating news that he was no longer a candidate for lung transplant. The patient had been very involved and knowledgeable about his diagnosis and planned treatment. Was it in his best interest to be told that he was off the waiting list and would most likely die, so that he could prepare himself? Or, would telling the patient, against the parents’ wishes harm the family unit? If, as a healthcare provider, you are asked by the patient, “Am I dying?” would you collude with the parents?

Relational autonomy: This patient is not an adolescent; however the concepts of relational and in-control autonomy are to be considered. If this patient was 17 years old, would you go against the parents’ wishes and tell the patient that he was no longer a lung transplant candidate? Relational autonomy focuses on both the adolescent patient’s ability to make decisions, as well as the parents’ wishes. In-control autonomy does not focus on the adolescent patient’s participation, because the patient is not at an age where he is self-sufficient.

Dear IPTA Colleagues,

We would like to invite you to attend the TTS 2018 Congress in Madrid, Spain from June 30 to July 5, 2018 and would like to especially draw your attention to the IPTA Pre-Congress Workshop on Sunday, July 1 from 14:00 to 17:30 which has some really exciting topics with which to update your knowledge in the following fields:

  1. Update of the Key Paeds Tx papers in the last 2 years in the fields of both Basic Science AS WELL as Clinical Transplantation – saves you having to read the papers!
  2. Discussion around the Tricky Concept of Adherence Intervention Trials
  3. What are the Tumour Risks following Pediatric Solid Organ Transplantation
  4. Metabolic Syndrome/Obesity – something we all face

Please make sure you have registered for the Pre-Congress Workshop as we would like to really have an interactive discussion. Also consider for those in Europe, sending your fellows – ideally for the whole congress – but even for the Post-graduate course on June 30 and July 1 – before the start of the Congress.

If you already registered to the TTS 2018 Congress and wish to add the IPTA Pre-Congress Workshop to your registration, please send an email to info@tts2018.org.

If you have not registered yet and would like to attend the IPTA Pre-Congress Workshop onsite registration will be opened on June 30th.

We look forward to seeing you all there.

Best wishes,

Mignon McCulloch
Carlos Esquivel

On their behalf

TTS 2018 Congress Secretariat
27th International Congress of The Transplantation Society
505 Boulevard René-Lévesque Ouest, Suite 1401
Montreal, QC, H2Z 1Y7, Canada

IPTA 2018 Symposium in Organ Transplantation in Children

The International Pediatric Transplant Association is proud to feature a special Section activity: the 2018 Symposium in Organ Transplantation in Children: An educational forum for physicians, surgeons, and allied health professionals.

The focus of this symposium is aimed at clinical and research fellows in pediatric solid organ transplantation, as well as residents, and other allied health professional or non-physician trainees who are planning a career in pediatric transplantation.

The symposium will also provide state of the art information to established physicians, surgeons and allied health professionals who participate in the care of children before or after solid organ transplantation. In this case, a registration fee of $150/ person applies. Maximum capacity for established practitioners will be 50. THERE ARE 5 SEATS REMAINING TO REGISTER.

We continue to have an IPTA Member highlighting very recent publications in an area of general interest in the field of pediatric organ transplantation. This Newsletter’s Literacy Highlights come from Christian Benden, MD, FCCP, Medical Director Lung Transplantation, University Hospital Zurich and IPTA Education Committee Past Chair.

  1. Paraskeva MA et al. Outcome of adolescent recipients after lung transplantation: an analysis of the International Society for Heart and Lung Transplantation Registry. J Heart Lung Transplant 2018; 37: 323-331

    Given the fact that recipient adolescent age is linked to inferior outcome after non-lung solid organ transplantation, Paraskeva from the Alfred Hospital in Melbourne, Australia, and an international group of co-workers utilized the largest thoracic transplant registry to date (International Society for Heart and Lung Transplantation Thoracic Transplant Registry) to investigate results of patients aged 10 to 24 years of age undergoing lung transplantation (LTX) between 2005 and 2013. Adolescent age has recently been defined as 10 to 24 years of age based on biologic and sociologic transitions happening in that age period. Almost 10% of the nearly 25,000 LTX patients in the Registry belong to the predefined adolescent age group. Overall, the survival in adolescents was significantly inferior compared to adults. In particular, the outcomes of adolescents aged 15 to 19 years of age were poorer compared to adults but also compared to all other pediatric age groups. Given these discouraging results in adolescent LTX recipients, it is paramount to improve particularly the transition of adolescents from pediatric to adult transplant services, strengthening self-care and decision-making of the adolescent. The data by Paraskeva and co-workers highlight again the urgency for further research in this area of transplant medicine that applies across all solid organ transplant types, with the aim to develop interventional tools to help to improve outcomes in this challenging patient group.

  2. Urschel S et al. Neurocognitive outcomes after heart transplantation in early childhood. J Heart Lung Transplant (in press)

    As outcomes following pediatric heart transplantation have markedly improved in the recent decade, non-somatic issues and health-related quality of life are increasingly important. Simon Urschel and colleagues from the University of Edmonton, Alberta, Canada, investigated neurocognitive capabilities in pre-school-age children either with congenital heart disease (CHD) or those failing anatomically normal hearts (CMP) undergoing heart transplantation (HTX) ≤ 4 years of age between 1999 and 2011. This prospective, multi-provincial project was based on data from the Complex Pediatric Therapies Follow-up Program in Canada assessing neurodevelopmental and quality-of-life outcomes in children in several Western Canadian provinces who require severe medical interventions in early childhood. The scores acquired from the multi-faceted cognitive assessment included the Wechsler Preschool and Primary Scales of Intelligence and a test of Visual-Motor Integration (VMI), scores obtained at 54 ± 3 months post-transplant. Of 76 study patients, 61 survived to assessment, and data of 55 children were finally included in the study results, N=32 with CHD and N=23 with CMP, respectively. Pre-transplantation, children with CHD were sicker spending more days on ventilators and undergoing more previous surgery, and the transplant operation required longer cardiopulmonary bypass time. Post-transplant, the mean IQ scores of all children were lower than the average and even significantly lower in children with CHD with more frequent intellectual disability; VMI was also reduced in the sub-group of children with CHD. Overall lower scores were correlated with a more complicated pre- and per-HTX path. Results of this study point out the importance of outcomes beyond sheer survival, focusing on non-somatic aspects and health-related quality of life. The need for close and continuous neurodevelopmental assessment is vital, and children and their families have to receive support based on individual requirements, psychosocial and financial, respectively.

  3. Want to stay up to date on transplantation? Want to test your knowledge? Here’s your chance! Introducing a new IPTA member benefit, the IPTA question. Members will have access to new questions with each newsletter with additional questions and answers available on the website. Each question will be accompanied by references to explain the correct and incorrect answers. Can be used as a teaching tool for students, residents and fellows as well.


    Click HERE to procede.

    Electronic Table of Contents (ETOC). As a result of a recent platform migration, Wiley expects that IPTA members will be able to receive content alerts for Pediatric Transplantation without any action needed by the reader. In the meantime, if you’re not receiving new content alerts from Wiley about Pediatric Transplantation content, you’re welcome to by visiting the journal’s home page with your IPTA access and clicking “Get Content Alerts.”

    Editorial board. Pediatric Transplantation is committed to establishing a rotation of members of the Editorial Board. The Editorial Board has recently been updated. As Editors-in-Chief, we express our gratitude to the previous Associate Editors for their service to the journal. Their contributions have helped shape the journal into something we are all very proud of. We are now working on the update of the other members of the Editorial Board. As IPTA is an international society, it is important to ensure global representation of the editorial board. If you are interested to serve on the editorial board, please send us your motivation and your CV with your academic accomplishments, burkhard.toenshoff@med.uni-heidelberg.de, smbartosh@wisc.edu

    IPTA writing project proposal form. On behalf of the IPTA Council, we welcome proposals for writing projects. As the majority of these writing projects will be meant for the society’s journal Pediatric Transplantation, all proposals will be reviewed by the IPTA Council with a recommendation made to the journal leadership. This form is now available on the website of Pediatric Transplantation. Please send inquiries to the chair of the IPTA Publications and Communications committee, johnson.jonathan@mayo.edu.


    Beginning with the next newsletter, we will be able to include announcements submitted by IPTA members for various events. Some potential examples of this may include:

    1. Event/meeting announcements
    2. Job opportunities/postings
    3. Requests for colleagues to join multi-center research collaborations

    If you have any of these that you wish to include in the newsletter, please email to mary.smith@tts.org. Please note that in any announcement about events or job opportunities, no follow-up will be provided by IPTA – as such, full contact information for all of these events/opportunities should be included in the announcement. Please try to keep these relevant to the field of pediatric transplantation and pediatric organ failure.



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