Luca Dello Strologo
1962-2022

Dear Colleagues,

We are sad to share the news that our friend and colleague Luca Dello Strologo has passed away peacefully this morning, 6th October 2022, after battling an illness for a long time.

As a Paediatric Nephrologist based at the Bambino Gesu Hospital in Rome, Italy he brought a lot of wisdom to the IPTA Council, which will be sorely missed.

Luca was renowned for building a very successful pediatric kidney transplant program at Bambino Gesu. He was devoted to his patients, and was a consummate educator, having trained many physicians in paediatric transplant nephrology. His passion for caring for children with kidney disease was shared with colleagues and centres in under-resourced countries.

We will miss him, and think of his family at this sad time. May his soul rest in peace.

On behalf of the IPTA Executive Council


Dear IPTA Colleagues,

Are we coming out of the COVID pandemic? Thanks to vaccination, to new therapies and perhaps to herd immunity, and having therapies if we catch COVID, I think we are out of the pandemic, or at the very least, we have it under control!

With this summer’s sustained wave of COVID-19 infections continuing to decline in the USA, we are adjusting our pandemic-related health system measures in concordance with our state and county public health authorities. Masking is no longer mandatory except for working in the clinical settings. The stadiums are full and there is no need to show proof of vaccination to enter the country.

The only thing I am 100% sure of is that I felt so good to attend the meeting of the The Transplantation Society (TTS) in Buenos Aires in person. It was invigorating to mingle with friends and colleagues, listen to outstanding presentations that led to excellent back and forth discussions, but also to participate in social activities such as dining out, and even attending a superb performance of the Buenos Aires symphony in the majestic Teatro Colon! Enjoying life again! That was it!

We had an outstanding pre-congress workshop in pediatric solid organ transplantation. The presentations covered new clinical innovations such as doing kidney transplants without immunosuppression, using living donors for intestinal transplants, utilizing ECMO as a bridge to transplantation in those cases of primary graft nonfunction, but also ethical issues in pediatric transplantation among others. I want to thank all the speakers and moderators of the sessions. This workshop was very well received, and we are exploring possibilities for translation of the talks into Spanish.

With that in mind, I am very much looking forward to welcoming you to the 12th Congress of the International Pediatric Transplant Association, on March 25-28, 2023 in Austin, Texas. We selected Austin because the weather in March will be perfect. Austin has a reputation as a center for arts and culture, with a thriving live music scene (home of the famous South by Southwest festival, as well as more than 250 live music venues). Austin residents are proudly bohemian and pride themselves on keeping Austin magical, retaining a unique atmosphere, culture and ethos within the state. Austin is a city of history and is home to the state Capitol building, and yet is surrounded by nature, with hiking trails and both natural and man-made pools all within the city limits. Foodies are in for a treat with a range of restaurants at their fingertips, including barbecue, arguably the state’s signature dish.

We have an outstanding Scientific Program and Calendar of events scheduled and cannot wait to warmly welcome you. Please go to www.ipta2023.org to find out more. Early Bird registration ends on December 12th, so please take advantage of the lower rates available and register soon!

As ever, IPTA remains a very busy Society! We are thrilled to announce 2 winning center pairings for the IPTA Outreach Program. These are Hospital for Sick Children, Toronto, Canada twinned with Fundacion Cardiovascular de Colombia, who will work together to develop a pediatric thoracic transplant program, and UCLouvain, Brussels, Belgium, twinned with Hospital of St. Nicolaus, Lviv, Ukraine, who will work together on a pediatric liver transplant program. We congratulate all involved and wish both pairs the very best of luck in their endeavours.

Our IPTA Committees continue to work on various projects, developing statements and guidelines, as well as continuing to write manuscripts to submit to our journal, Pediatric Transplantation. We cannot do what we do without you, our members. There are always opportunities to become involved in the Society. We encourage you all to keep up to date on paying your dues! You can do this by following this link https://tts.org/ipta-members-area/ipta-subscriptions . Please also encourage your colleagues to join us! We have Associate, Full and Trainee memberships, as well as a discounted rate for Emerging Economies. Share this link widely! www.tts.org/ipta-members-area/ipta-join We will also soon be adding a new membership category for Student members – watch this space as we welcome the future of the Society!

See you all in Austin!

Yours respectfully,

Carlos O. Esquivel
IPTA President

Sociocultural Challenges in Indigenous Pediatric Patients with Chronic Kidney Disease Who Go To Kidney Transplantation

Chronic Kidney Disease (CKD) and kidney transplantation present particular challenges and have important repercussion in not only the patients’ personal lives but also in their families’ lives. Pediatric nephrologists and kidney interdisciplinary teams must develop special skills in dealing with these patients and their families.

Currently, there is data on the high risk of kidney disease in Aboriginal population groups in Australia, Canada, and Mexico (1)(2). Population studies in Australia, for instance, have observed how the prevalence of chronic kidney disease and hypertension in aboriginal groups are higher than in non-aborigine groups, but little is known in South America and much less during pediatric age.

Latin America has nearly 400 indigenous communities who represent 37-million people, most of which have high rates of morbidity and mortality indicators. In turn, Colombia – a pluricultural country – with 3.4% indigenous population, has identified 87 ethnic groups that constitute a population of approximately 1,392,623 people. In the Colombian southwest, the department of Cauca is also the center of indigenous community settlements. In this region, the percentage of indigenous population corresponds to 25% of the entire population (351,419/1,400,000) in the department.(3)

When we have a relationship with a family from a community with a singular cultural heritage involved, as indigenous groups in Colombia, special consideration must be considered to get in touch with them.

In this newsletter I illustrate, through two examples, some issues about the difficulty in understanding and treating patients with CKD and planning the kidney transplantation in this unique population. Two cases, one from the Emberá Chamí community in western Colombia with CKD and another one from Paez community located at the southwest of Colombia, are exposed in order to explore the implications of a different worldview in patient management.

Colombia: Distribution of the Emberá-Chamí and Paez communities.

J is the third child of an indigenous couple under the age of 30 living in a rural area. When he was two months old, he was diagnosed with vesicoureteral reflux, dysplastic kidneys, and ESKD. J’s mother had no prenatal care, and the nearest health center was four walking hours away. J was hospitalized and put on peritoneal dialysis. He was accompanied by his mother during the first month of his hospital stay. After that, both parents visited him every other month and stayed for two weeks during each visit.

The father said he would act as a kidney donor in spite of his wife’s objections, but then changed his mind after consulting his mother in law. Although the Emberá Chamí are organized in nuclear family subgroups, the extended family maintains an important control over the whole community.

J would have long ago been treated as an outpatient, if not for the physical restraints in accessing medical help and the fear to whether the community would or would not be able to provide him with peritoneal dialysis. In a community where 35.6% of the population is illiterate and 10.2% has little support for basic sanitation, a toddler on dialysis or post-transplant is a real challenge. Hence, the search for an adequate foster family begun with its own challenges. He became to a KTx at 15 months old.

A, the second patient, is a boy with dysplastic kidneys. He went into ESKD when he was one year old and required KRT. As his parents couldn´t take care of him, so he was put up for adoption. He went to peritoneal dialysis and received a living donor transplant from his biological mom at age four, with a very good outcome. He presently has two guardians: his biological mom and his adoptive family. He lives outside the indigenous community.

When dealing with a patient from a different cultural background, special care must be taken in making sure the family understands the exact nature of their child’s disease and the possible treatments. Having them grow outside their own cultural heritage will pose, with time, an emotional burden on the child and his family as well as a loss for an entire community and country.

J was supported at the beginning of KTx under the care of a medical institution trying to assume a role for which it is not prepared: guardianship. Then, he has remained in a step home, outside of his community.

Patient A has two caregivers and he is growing up in a healthy environment and is still having contact with his family and their culture.

Different worldviews should be considered when discussing treatment options in indigenous children.

We would like to highlight some issues that should be considered in the aboriginal population, in order to harmonize their permanence among their communities or go to live outside their own environments.

Risks associated with the remaining among the aboriginal communities.

  1. Difficult access to conventional health facilities
  2. Infections due to sanitary practices
  3. Physical restraints in providing KRT: peritoneal dialysis
  4. Communication barriers in assuring the proper community understanding and willingness to manage the ESKD or KTx
  5. Risk increased of nonadherence of medication treatment

Risks associated to prolonged hospitalization

  1. Possible abuse, alienation due to different views of health and disease.
  2. Loss of cultural heritage and identity
  3. Separation of a family
  4. Emotional deprivation
  5. Difficulties in ensuring adequate stimulation and experiences for a normal development

References

  1. L Haysom R Williams, E Hodson, LP Roy, D Lyle and JC Craig. Markers of CKD Aboriginal and non-Aboriginal children. Kidney International (2007) 71, 787–794
  2. Susan M. Samuel MD MSc, Bethany J. Foster MD MSc, Brenda R. Hemmelgarn PhD MD, Alberto Nettel-Aguirre PhD PStat, Lynden Crowshoe MD, R. Todd Alexander MD PhD, Andrea Soo MSc, Marcello A. Tonelli MD SM; for the Pediatric Renal Outcomes Canada Group
    Incidence and causes of end-stage renal disease among Aboriginal children and young adults CMAJ, October 2, 2012, 184(14) DOI:10.1503 /cmaj.120427
  3. Ministro de Salud y Protección Social. Perfil de Salud de la Población Indígena, y medición de desigualdades en salud. Colombia 2016. 2016.
Submitted by Dr. Jaime Restrep

Pediatric Transplantation Update - October 2022

Visual Abstracts

Pediatric Transplantation is now publishing Visual Abstracts!
The visual abstract is one single‐panel image that is designed to give readers an immediate understanding of the take‐home message of the paper. The visual abstract will appear with the article on the Journal’s website. The visual abstract should visually summarize the main findings and aim to attract readers' attention to the article. Its intent is to encourage browsing, promote interdisciplinary scholarship, and help readers quickly identify which papers are most relevant to their research interests.

Key components of the Visual Abstract are as follows1:

  • Summarize Key Question Being Addressed:
    This usually comes from the title of the article or heading of key figure.
  • Summary of Outcomes:
    Most articles have many, >3, but the Visual Abstract will focus on just the first 3 primary findings of the article.
  • Author, Citation:
    Typically including the first author’s name, journal, and year of publication.
  • State Outcome Comparison:
    A short phrase that clearly states the outcome with some directionality. For example, “Decreased Need for Blood Transfusions” is used rather than simply “Blood Transfusions.” As much as possible, the language should use the same prose and interpretation used in the article for accuracy and consistency.
  • Visual Display of Outcome:
    A simple, single-colored icon that represents the outcome. While there are many options, Flatiron is one website that contains a free icon bank, www.flaticon.com/free-icons/abs.
  • Data of Outcome (Units):
    In addition to stating the outcome, visual abstracts give the numeric representation with clear labeling of the units.

Templates for the Visual Abstract are included with the first letter to the authors requesting revisions on Original articles. The template includes instructions, a library of graphical elements and example abstracts.

Review Articles

The EICs are interested in hearing suggestions from our readership for Invited Review Article topics. Please submit suggestions to smbartosh@wisc.edu or Burkhard.Toenshoff@med.uni-heidelberg.de

Peer Review Network Change

AJT is moving out of the Wiley network of transplant journals. Presently if a manuscript is submitted to American Journal of Transplantation or Pediatric Transplantation and rejected, authors have an option of asking for transfer to other Wiley transplant journals within the Peer Review Network (AJT, PETR, Clinical Transplantation, Transplant ID). This option for auto transfer from or to AJTM will no longer be available for authors.

Submitted by Dr. Sharon Bartosh and Dr. Burkhard Toenshoff
on behalf of Pediatric Transplantation Journal

Publication Committee Update

Since it has been rotation time, all the members of the Publication Committee warmly welcome Koji Hashimoto, Cleveland, USA, Jason Vanatta, Memphis, USA, and Adrianna Sikora, Aurora, USA (AHNP representative) to the team. We would also like to thank those whose terms ended last May for their time and effort spent: Cheryl Sanchez-Kasi, California, USA, Andreea Rachisan, Cluj-Napoca, Romania, and Diana Shellmer, Pittsburgh, USA (AHNP Committee).

As a new contribution, the Publication Committee will discuss an outstanding article in each newsletter beginning next December 2022. These articles should have provided new important information and can address a transplant specialty. They will have not yet been published in Pediatric Transplantation or have been published in other journals. The Publication Committee is happy for the contribution of our president Carlos Esquivel and the editor-in-chief Burkhard Tönshoff, who will support the selection of appropriate content for the readership of the IPTA newsletter. The presentation of the article will also contain some explanation on how the article needs to be seen in context of the current literature and knowledge.

The Publication Committee continues to work on providing mentoring to younger colleagues and will actively support the upcoming IPTA meeting. If you are interested in receiving mentoring, please contact Chesney Castleberry (chesney_castleberry@mednax.com). In addition, please stay tuned for a webinar talk that will be aired in the first months of 2023.

Lastly, we would like to ask you to feel free to come up with any suggestions and/or contributions for the IPTA newsletter. After all, the newsletter is meant for you!

Warm regards,
Marta L Monteverde
On behalf of the Publication Committee

Submitted by Dr. Marta Monteverde on behalf of the Publications Committee

Allied Health and Nursing Professionals Committee Update

The Allied Health and Nursing Professionals (AHNP) Committee of IPTA is committed to improving the health of all children who require transplantation. To advance this mission, the committee developed a survey, open to all allied health and nursing professionals working in paediatric transplant (regardless of IPTA membership), with the following aims:

  1. describe the prevalence and diversity of the clinical, research, and teaching practice of AHNP
  2. develop a greater understanding of multidisciplinary team composition
  3. identify possible barriers and challenges for AHNP practice.

Additionally, the COVID-19 pandemic was declared prior to survey’s circulation, providing the Committee an opportunity to explore practice-based changes associated with the onset of the pandemic. The survey distributed through email by TTS and IPTA and was active between September 18 and December 31, 2020.

119 respondents completed the survey, representing a diverse group of professionals including; Nursing and Advance Practice Nursing (includes Nurse Practitioner, Clinical Nurse Specialist/Clinical Specialist, Physician Assistant, General Nurses, Transplant Coordinator), and Allied health (including Psychologists, Dieticians, Pharmacists, Social Workers, Physical Therapists, Occupational Therapists, Creative Therapists (i.e., Music, Art and Drama) and Other (kinesiologist, researcher) Half of the respondents reported practicing in the field of pediatric transplantation for over 10 years. The majority were from North America with representation also from the United Kingdom, Europe, Australia, New Zealand, South Africa, Central and South America.

The results suggested that in terms of clinical practice, Nurses, including those in advanced practice roles, typically provided care to a single organ group, while Allied Health professionals provided care for multiple organ groups. Furthermore, funding allocation was different across Nursing and Allied Health professions; one third of survey respondents were not provided with formal funding to complete their clinical activities in transplant programs, with the majority of these being allied health professionals. Barriers to practice were described, and typically related to resource constraints (e.g., lack of dedicated time to perform clinical duties, limited funding, high caseload, inadequate staffing, treatment space), the desire to develop culturally sensitive and inclusive practice, increased training and involvement in research and education, and the need for evidence-based practice guidelines.

The shift in practice during COVID-19 was seen in both positive and negative ways. Overall, the shift to telehealth during the pandemic highlighted barriers and disparities that existed in access to health care for many patients and families. Results recognized the clear benefits of remote work and virtual care, while also highlighting limitations and potential risk, particularly overuse as necessitated by the situation. Thus, these results highlight the need for a balanced approach to work and care that involves virtual technologies as a tool for increasing access, efficiency, and quality of care.

Implications for Professional Practice in Nursing and Allied Health

The information obtained through this survey highlights the adaptability of allied health and nursing professionals throughout transplant programs across the world, specifically the eleven countries represented in the survey. Additionally, reflected is the high value of multidisciplinary teamwork. It also highlights the importance of research on the role and scope of AHNP in transplant care and helps to further support and promote direct funding for AHNP within the transplant team globally. The survey results have been compiled as two separate manuscripts and are currently under review with the Journal of Pediatric Transplantation.

The IPTA Allied Health and Nursing Committee is working towards addressing the expressed needs of AHNPs that were elucidated from the survey (e.g., barriers to practice, training in research, education, evidence-based practice guidelines). Specifically, the committee is working towards providing further education and mentorship in the areas of research, practical resources such as business case development, ways to advocate for resources within an institution, and sharing professional knowledge and resources amongst AHNP professionals to enhance international pediatric transplant care.

Conversations during the AHNP business meeting as part of the 2022 IPTA Congress began to further define ways the committee can support allied health and nursing professionals in these areas. Some of these include, but are not limited, to:

  • Group research projects such as systematic or scoping reviews
  • Educational webinars on a variety of allied health topics
  • Resource bank with shared materials and guidelines
  • Increasing membership connection via Zoom and/or at IPTA Congress
  • Professional development skills (e.g., journal reviews, business cases)
  • Mentorship between allied health and nursing professionals

The Allied Health and Nursing Professional Committee leadership and members are excited to be turning the results of this survey into tangible opportunities and resources for AHNPs across transplant centers around the world. If you are interested in learning more, please reach out to committee co-chairs, Gillian Mayersohn (Gillian.Mayersohn@bjc.org) or Ashley Graham (Ashley.Graham@sickkids.ca).

Submitted by Committee Co-Chairs Ashley Graham and Gillian Mayersohn on behalf of the Allied Health and Nursing Professionals Committee

IPTA Outreach Program 2022

Congratulations to our 2022 IPTA Outreach Program winners!

Many Congratulations to the following paired centres, who were successful in being awarded funds on behalf of the 2022 IPTA Outreach Program:

Hospital for Sick Children, Toronto, Canada paired with
Fundacion Cardiovascular de Colombia, Santander, Colombia


Hopital Saint-Luc, UCL Louvain, Brussels, Belgium paired with
Saint-Nicholas Hospital, Lviv Territorial Medical Association Multidisciplinary Clinical Hospital, Lviv, Ukraine

IPTA 2023

Join us for the 12th IPTA Congress and connect with the leading global pediatric transplantation community! For more information and for important dates, please go to www.ipta2023.org.

Early Bird Registration Deadline: December 12th 2022

TTS 2022 Update

Recordings are now available from the IPTA Pre-Congress Session at TTS 2022! Click the link below to view! (Congress log in required)

Based on 4 themes of Lifelong immunosuppression reduction, donors for pediatric recipients, perioperative considerations in pediatric SOT and multi-organ transplantation, this exciting program features prominent IPTA members, as well as showcasing pediatric transplantation professionals from around the world.


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+1-514-874-1717 x210
katie.tait@tts.org

Address

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