IPTA July 2019 Newsletter

ipta newsletter

Welcome Message from Dr. Mignon McCulloch | Question Bank | Ethics Case | EBV Consensus | IPTA Council | Allied Health Professional Committee | Communications Committee | Education Committee | Ethics Committee | ID Committee | Membership Committee | Outreach Committee | Publications Committee

Welcome Message from Dr. Mignon McCulloch

Dear IPTA members and attendees of the IPTA 2019 Congress,

We would like to thank you for your part in attending and participating to make the IPTA 2019 Vancouver Congress such a hugely successful Congress and opportunity to network with friends and colleagues in the beautiful city of Vancouver. Learning in such a beautiful environment was not a hardship.

If you didn’t get the chance to join this time around, we hope that you can join us in Prague in 2021. Furthermore, if you are a member of IPTA, you can access the recordings via our section website. You are able to watch the talks and presentations HERE (member login required).

We would like to share with you some of the interesting facts from this meeting

  • We welcomed 522 participants from 36 countries.
  • The Congress started with a special opening address and blessing by Elder Roberta Price.
  • Totem poles watched over speakers as they shared knowledge with friends and colleagues.
  • Pre-meeting symposia including a Writing Course workshop, Foundations in Pediatric Transplantation “long-term outcomes” and a first-ever all-day Allied Health Symposium on Improving Outcomes in Pediatric Transplantation took place on May 4.
  • We remain very grateful for generous sponsorship from UPMC Children’s Hospital of Pittsburgh, Astellas, One Lambda, Stanford Children’ Health & Lucile Packard Children’s Hospital Stanford, Dr. Ken Citron Charitable Trust and Bryce Cormier Memorial Fund as well as all our many collaborating hospitals & non-profit organizations.

PROGRAM HIGHLIGHTS AT A GLANCE

  • 323 abstract submissions from 34 countries
  • 115 invited speakers from 13 countries
  • 6 Plenary Symposia
  • 5 State-of-the Art Presentations
  • 3 Pre-Congress Symposia
  • 16 Interactive Workshops
  • 21 Oral Abstract Sessions
  • 3 Poster Sessions and
  • 2 Morning Industry Symposia
  • Abstracts were published in Pediatric Transplantation Journal

We look forward to welcoming you to the next IPTA Congress in Prague, Czech Republic. Please mark your calendars: April 17-20, 2021.

Until then… please remain involved in our organization by looking out for our newsletters, joining us as a member, and visiting our website.

Best wishes,

Mignon McCulloch
IPTA President and IPTA 2019 Co-Chair

Carlos Esquivel
IPTA President-elect and IPTA 2019 Co-Chair


IPTA Council, Vancouver, 2019

Question Bank

Once again our Question Bank returns to keep you on your toes. We thank Alicia Chapparo, Luca Dello Strologo and Stephen Marks for these. Test your skills with these questions.

Click here to proceed

Ethics Case: Transplantation in children with mental illness

Glenda Moonsamy
Charlotte Maxeke Johannesburg Academic Hospital, Department of Paediatrics and Child Health
University of the Witwatersrand, Faculty of Health Sciences
Johannesburg, South Africa

Case study:

This is a case of a 13 year old boy born with multiple congenital abnormalities of the kidney and urinary tract (CAKUT). He had an absent right kidney, with hydronephrosis and an ureterocoele in the left urinary tract. In addition to this, he was also found to have spina bifida occulta (L5-S3) with a neurogenic, septated bladder. After multiple surgical procedures to reconstruct the bladder and remove the ureterocoele, self intermittent clean catheterization (SICC) was initiated. He also had ADHD, anxiety disorder, delayed neurocognitive function and extreme needle phobia that was being managed with medication and psychotherapy via the neurodevelopment and child psychology unit. Phlebotomy was difficult but regular sessions with the psychologist made the process much easier but unanticipated phlebotomy or interventions were not well received.

At the age of 11 years, he went into end stage kidney disease and by then his mother was being worked up as a renal transplant donor. However, at that time, despite extensive counselling, the child vehemently refused dialysis, opting rather to wait for mum’s workup to be completed and a renal transplant be performed. His refusal was such that, to quote his words, “I’d rather die than go onto dialysis”

The mum’s workup took longer than anticipated and he subsequently developed complications of end stage kidney disease, and dialysis was indicated. Again, it took a considerable amount of counselling and psychotherapy, but he was successfully initiated onto automated peritoneal dialysis. He was also worked-up, presented to the renal transplant panel and listed successfully for both a cadaver and related donor kidney transplant (a psychological assessment was included).

After being on the cadaver list for approximately one year, our patient was called up for a cadaver transplant. His mum was going through a difficult period, having just lost her dad & they had difficulty arranging transport to the hospital as well, so the kidney was declined. A month later, he was called up again. This time however, he had a psychological breakdown and refused to come to the hospital for the transplant. His mum confirmed that his therapy sessions were not as consistent as they were before.

We have since suspended him from the transplant list and have reconsidered his suitability for transplant. His mum, who was initially very keen on donating her kidney, has also become more apprehensive with respect to her child’s psychological state. He continues receiving therapy and dialysis and we hope in time may develop the neurocognitive and psychological maturity required for successful transplantation.

Ethics commentary:

Renal transplantation is associated with significant psychosocial stress both before and after transplantation. Many patients and their families suffer from varying degrees of post-traumatic stress during this period. They all require a significant amount of supportive care, hence the need for a multi-disciplinary team approach.

A child with a pre-existing mental disorder requiring renal replacement therapy thus poses an even greater need for therapy and support. Psychosocial assessments are an essential component of the framework for transplant suitability. There is a paucity of information regarding the transplantation of children with mental illness.

Mental illness in children can be a diagnostic challenge and a childhood diagnosis often confers a poorer prognosis. With respect to transplantation, I think the processes we apply currently, where each child is assessed on an individual basis, seems to be the best approach. The biggest challenges faced are compliance and worsening of the current mental state.

The above case is a glimpse in the arduous journey travelled by the patient, family and health care providers. Transplantation is difficult with the best of patients but in those patients with mental illness, it makes us question the suitability of such patients even if a related living donor is available.

EBV Consensus

The IPTA Infectious Diseases Committee continues to be vested in initiatives in pediatric transplant infectious disease related to Clinical care, Advocacy, Research, and Education (ID-CARE).   This year, the committee has been active in providing recommendations regarding the approach to the solid organ transplantation (SOT) candidate with an active infection, pediatric-specific questions related to CMV infection and disease, and in IPTA-sponsored consensus conferences related to live virus vaccination and Epstein-Barr virus (EBV)-associated post-transplant lymphoproliferative disorder (PTLD) after pediatric SOT.  The EBV/PTLD consensus conference was a major collaborative effort involving more than 30 participants from the United States, Canada, and Europe organized into 4 working groups addressing the diagnosis, diagnostic tools, management, and prevention of EBV disease and PTLD in children undergoing SOT. These 4 working groups groups held frequent teleconferences to review data in an effort to identify and preliminarily address key questions in advance of the face-to-face meeting which was held in Nashville, Tennessee in early March 2019. At this meeting, participating members of the consensus conference reviewed and tentatively agreed upon proposed recommendations addressing numerous pediatric-specific issues issues relating to EBV and PTLD.  It is anticipated that 5 manuscripts addressing the methodology and recommendations of the consensus conference will be published in Pediatric Transplantation in the relatively near future.   Ongoing and upcoming initiatives include assessing practice patterns and providing evidence-based recommendations related to:  vaccination, including vaccine  hesitancy, yearly influenza vaccine update, and live virus vaccination after pediatric solid organ transplantation; evaluating antimicrobial prophylaxis strategies, that are pathogen specific (e.g. Pneumocystis) and organ-specific (e.g. liver); and at the request of the IPTA council, providing strategies for infection prevention in patients with asplenia.   As always, ID-CARE committee members are eager for input from and ongoing collaboration with other IPTA committees.

IPTA Council & Committees 2019-2021

Much of the work of IPTA is can only be done through the contributions of our Council and Committees. We would like to introduce you to the IPTA Council and Committee members for 2019-2021.

IPTA Council

Officers

President (2019-2021) Mignon McCulloch, Cape Town, South Africa This email address is being protected from spambots. You need JavaScript enabled to view it.
President-Elect (2019-2021) Carlos Esquivel, Stanford, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
Secretary Treasurer (2019-2021) Lars Pape, Hannover, Germany This email address is being protected from spambots. You need JavaScript enabled to view it.
Immediate Past-President (2019-2021) Anne Dipchand, Toronto, Canada This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Councilors

Councilor (2017-2021) Stephen Alexander, Westmead, Australia This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2019-2023) Louise Bannister, Toronto, Canada This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2019-2023) Luca Dello Strologo, Rome, Italy This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2019-2023) Deirdre Hahn, Sydney, Australia This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2019-2023) Evelyn Hsu, Seattle, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2017-2021) Alan Langnas, Omaha, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2017-2021) Stephen Marks, London, United Kingdom This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2017-2021) Klara Posfay-Barbe, Geneva, Switzerland This email address is being protected from spambots. You need JavaScript enabled to view it.
Councilor (2017-2021) Katherine Twombley, Charleston, USA This email address is being protected from spambots. You need JavaScript enabled to view it.

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IPTA ALLIED HEALTH PROFESSIONAL COMMITTEE

Co-Chair Anna Gold, Toronto, Canada This email address is being protected from spambots. You need JavaScript enabled to view it.
Co-Chair Jenny Wichart, Calgary, Canada This email address is being protected from spambots. You need JavaScript enabled to view it.
     
Member Christine Divens, Pittsburgh, USA  
Member Yuko Hamasaki, Tokyo, Japan  
Member Debra Lefkowitz, Philadelphia, USA  
Member Catherine Patterson, Toronto, Canada  
Member Diana Shellmer, Pittsburgh, USA  
Member Jo Wray, London, UK  
Council Liaison Louise Bannister, Toronto, Canada  

Past Chairs

Co-Chair Louise Bannister, Toronto, Canada
Co-Chair Beverly Kosmach-Park, Pittsburgh, USA

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Communications Committee

Chair Vikas Dharnidharka, St. Louis, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
     
Member Allison Carroll, Edmonton, Alberta  
Member Srinath Chinnakotla, Minneapolis, USA  
Member Shawn West, Pittsburgh, USA  
Council Liaison Carlos Esquivel, Standford, USA  

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Education Committee

Chair and
Council Liaison
Katherine Twombley, Charleston, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
Past Chair Rohit Kohli, Los Angeles, USA  
     
Member Sharon Bartosh, Madison, USA  
Member Andrew Bonham, Palo Alto, USA  
Member Alicia Chaparro, Buenos Aires, Argentina  
Member Andre Dick, Seattle, USA  
Member Ahmed Elsabbagh, Indianapolis, USA  
Member Evelyn Hsu, Seattle, USA  
Member Rohit Kohli, Los Angeles, USA  
Member Adam Putschoegl, Rochester, USA  
Member Jamie Restrepo, Cali, Colombia  
Member Tomas Seeman, Prague, Czech Republic  

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Ethics Committee

Chair Michael Freeman, Hershey, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
Past Chair Richard Trompeter, London, UK  
     
Member Robert Ettenger, Los Angeles, USA  
Member Aviva Goldberg, Winnipeg, Canada  
Member Rebecca Greenberg, Toronto, Canada  
Member Debra Lefkowitz, Philadelphia, USA  
Member Marilyn Moonan, Boston, USA  
Member Julia Steinke, Grand Rapids, USA  
Council Liaison Stephen Marks, London, UK  

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ID Committee

Chair Monica Ardura, Columbus, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
Past Chair Michael Green, Pittsburgh, USA  
     
Member Abanti Chaudhuri, Stanford, USA  
Member Waldo Concepcion, Palo Alto, USA  
Member Lara Danziger-Isakov, Cincinnati, USA  
Member Michael Green, Pittsburgh, USA  
Member Britta Höcker, Heidelberg, Germany  
Member Arnaud L'Huillir, Geneva, Switzerland  
Member Marian Michaels, Pittsburgh, USA  
Member Dimitri Van Der Linden, Brussels, Belgium  
Member Anita Verma, London, UK  
Council Liaison Klara Posfay-Barbe, Geneva, Switzerland  

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Membership Committee

Chair Cozumel Pruette, Baltimore, USA This email address is being protected from spambots. You need JavaScript enabled to view it.
Past Chair Katherine Twombley, Charleston, USA  
     
Member Asiri Abeyagunawardena, Peradeniya, Sri Lanka  
Member Stephen Alexander, Westmead, Australia  
Member Stephen Gray, Birmingham, USA  
Member Nancy Halnon, Los Angeles, USA  
Member Irene Kim, Los Angeles, USA  
Member Mohammed Malekzadeh, Los Angeles, USA  
Member Rakesh Sindhi, Pittsburgh, USA  
Council Liaison Deirdre Hahn, Westmead, Australia  

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Outreach Committee

Chair Fiona Mackie, Sydney, Australia This email address is being protected from spambots. You need JavaScript enabled to view it.
Past Chair Tom Blydt-Hansen, Vancouver, Canada  
     
Member Dev Desai, Dallas, USA  
Member Hanh Vo, Omaha, USA  
Member Christine Hwang, Dallas, USA  
Member Joseph Magliocca, Atlanta, USA  
Member Saeed Mohammed, Chicago, USA  
Member JoAnn Morey, Boston, USA  
Member Raymond Reding, Brussels, Belgium  
Member Jason Vanatta, Memphis, USA  
Council Liaison Evelyn Hsu, Vancouver, Canada  

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Publications Committee

Chair Anette Melk, Hannover, Germany This email address is being protected from spambots. You need JavaScript enabled to view it.
Past Chair Jonathan Johnson, Rochester, USA  
     
Member Chesney Castleberry, Cincinnati, USA  
Member Ryan Fischer, Kansas City, USA  
Member Richard Mangus, Indianapolis, USA  
Member Patrick McKiernan, Pittsburgh, USA  
Member Marta Monteverde, Buenos Aires, Argentina  
Member Thamara Perera, Birmingham, UK  
Member Dechu Puliyanda, Los Angeles, USA  
Member Mariastella Serrano, New Orleans, USA  
Member Burkhard Tönshoff, Heidelberg, Germany  
Council Liaison Luca Dello Strologo, Rome, Italy  

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