IPTA September 2017 Newsletter
IPTA 2017 Congress | Ethics Case Study 1 | Ethics Case Study 2 | Literary Highlights | Ethics Committee | Education Committee | Publications & Communications Committees | Membership Committee | Allied Health Professional Committee | Outreach Committee | ID Committee
Ethical Case Studies
IPTA is pleased to introduce Case Studies dealing with key ethical issues in our quarterly newsletters to spark awareness, education and discussion. These will be spearheaded by the IPTA Ethics committee.
Case Study 1
An eight-year-old girl with end-stage kidney disease secondary to Finnish type congenital nephrotic syndrome initially managed with daily albumin infusions requiring peritoneal dialysis from nine months of age followed by bilateral retroperitoneal nephrectomies at ten months of age. In her first two years of life, she had numerous treatment-related problems including multiple episodes of sepsis, requiring changes of central venous catheters; a chronically leaking gastrostomy (which eventually was removed) and severe gastro-oesophageal reflux disease, hypothyroidism, renal osteodystrophy and hypertension secondary to fluid overload. Following several episodes of severe peritonitis, including MRSA peritonitis, her peritoneal dialysis catheter was removed and subsequently an abdominal collection was drained. Haemodialysis was then commenced, but venous access proved to be difficult and became increasingly so over the forthcoming months.
A venogram revealed many occluded and stenosed veins; the thromboses in the superior vena cava and subclavian veins were identified as compromising catheter patency. At 19 months, she was admitted urgently to hospital with physical signs of acute sepsis (fever, tachycardia) associated with marked abdominal distension and tenderness. She failed to respond to standard antibiotic therapy and was found to have vegetation on the tricuspid valve within the right ventricle, suggestive of infective endocarditis, but without evidence of pulmonary emboli. She was treated with six weeks of intravenous antibiotics, and a permanent haemodialysis catheter was inserted. At this stage, our patient had suffered episodes of severe MRSA peritonitis associated with staphylococcal bacterial endocarditis, necessitating the removal of her peritoneal catheter; peritoneal dialysis was no longer an option. Haemodialysis was also problematic because of extreme difficulty in vascular access; it also became apparent that a vascular graft for haemodialysis would not be successful.
Unfortunately, there were no transplant options as she had been on call for over a year for a deceased donor and there was no living donor as her mother could not donate for medical reasons and her father, although a suitable match, stated he was unable to donate.
What medical care options exist for this patient?
What are the ethical considerations?
Case Study 2
A 3 year old girl was diagnosed with nephrotic syndrome secondary to FSGS. She was initially treated with steroids and Cytoxan later converted to cyclosporine A. Despite treatment she slowly deteriorated into ESRD and started dialysis. At 10 years of age, she underwent a deceased donor kidney transplantation and was managed with triple immunosuppressive protocol (CyA, MMF and steroids) without pre-transplant plasmapheresis (PP).
At the 14th post op day with creatinine levels dropping to 1.0mg/dL she developed proteinuria of 17g//24hr. and was placed on PP sessions 3 times/ week followed by Rituximab (single dose of 375mg/m2). The following months despite aggressive continuous sessions of PP maintaining her protein urine level < 10g/day she developed hypoalbuminemia (albumin levels 2.2g/dl) associated with severe leg edema, skin infection and convulsive disorder secondary to PRESS. At six months after transplant her mother requested to discontinue immunosuppressive treatment and she returned to dialysis.
Six years later she was fed up with dialysis and asked to be listed for a second transplant.
At this stage would you consider a second transplant using one of the parents who was a match donor knowing that this scenario might be associated with a high risk of recurrence?
With each newsletter, we plan to have an IPTA member highlight important recent publications in an area of general interest. Since all our members have access to our journal PEDIATRIC TRANSPLANTATION, this feature will highlight reports, from other journals, which may not be readily available to all our members. As with this inaugural edition, reports of adult data that may have relevance to our members may also be included. This newsletters’ literary highlights come from Sharon Bartosh, M.D., Chief, Pediatric Nephrology, American Family Children’s Hospital, University of Wisconsin.
IPTA Committees 2017-2019
Much of the work of IPTA is can only be done through the contributions of our committees. We would like to introduce you to the IPTA committees for 2017-2019 and share their current initiatives.
Allied Health Professional (AHP) Committee
The AHP committee is in the process of carrying out a survey to describe the demographics and interests of transplant allied health professionals. The goal is to determine how the allied health committee can encourage and increase IPTA membership, as well as foster a greater involvement in allied health activities and committee work within the organization. The committee will revise and expand the Allied Health Professional page on the IPTA website to include a mission statement, a description of the AH community in transplant and their specific roles in caring for pediatric transplant patients, committee initiatives, membership benefits, quotes from members and how to become a member. The committee also plans to explore a link for networking and the ability to post questions to other AH members. The committee plans to develop an article for publication in Pediatric Transplantation on a contemporary topic that is relevant to the AHP community in addition to participating in review of the UNOS parent manual.
The Education committee has already participated in the IPTA review of the UNOS parent material and is in the process of a survey related to the Postgraduate Course of the IPTA 9th Congress in order to inform further course development. The Education committee will be developing the curriculum for the IPTA Fellows meeting in November 2018 and the renamed postgraduate course “Foundations in Transplantation” for the IPTA 10th Congress in Vancouver in 2019. Other exciting initiatives will be forthcoming this Fall.
The Ethics committee is the newest IPTA committee that has been formed to address the increasing ethical awareness in pediatric solid organ transplantation. As they develop their initiatives as a new committee, the group plans to raise awareness and educate by contributing cases to the IPTA newsletter (see this issue of the newsletter for their first contribution). In addition, to build upon a recent TTS initiative, they will be editing the recent TTS Ethics Survey for pediatrics with a goal to circulate it in early 2018 and to use the information gathered as a foundation for further initiatives moving forward.
Infectious Disease Committee
The ID committee has a number of active initiatives involving assessing current practice and developing consensus recommendations for publication in Pediatric Transplantation including 1) evaluation and approach to the presence of active infection in the potential pediatric transplant recipient, 2) status of the use of live vaccines after pediatric solid organ transplantation, and 3) pneumocystis prophylaxis strategies, in addition to a yearly Influenza Update. The ID Committee is proposing to develop a commentary to the TTS CMV Guidelines (currently in progress) specific to the pediatric perspective. This would highlight changes to both the overall document as well as to the pediatric section and its recommendations. In addition, the Committee hopes that the proposed commentary could identify ongoing pediatric specific gaps in the data with a goal of hoping to target future. Looking ahead, the ID committee is exploring the development of PTLD practice recommendations potentially including diagnosis, management and prevention. These are just some of the exciting initiatives coming out of the ID committee.
The Membership Committee will be exploring a new dues structure for IPTA which is long overdue. This will take into consideration many different factors including our diverse membership of an international nature, the need to foster collaboration at all levels of pediatric transplantation, the need to develop junior people to pursue pediatric transplantation, and administrative considerations including the transition to TTS as a section and the move to an online journal. The Membership committee with also be looking at how to enhance the value of IPTA membership, focusing on member renewal and retention, and recruitment of new members – especially junior members and allied health professionals.
The Outreach committee is in the process of revising its mission, purpose and the application guidelines, processes and procedures - all of which will be made available to the IPTA membership when completed and approved by the IPTA Council. The committee has recently reviewed the status of the past projects and will provide a summary for the IPTA newsletter this year in addition to putting information on the IPTA website. The recent projects in Sri Lanka and Cape Town are in the process of being reviewed. In 2018, the committee will spearhead a call for a new round of applications following consolidation of all of the abovementioned initiatives. Stay tuned for more information!
Publications and Communications Committee
The Publications committee is going to assume a central role in increasing the publications from IPTA members in Pediatric Transplantation using a number of different strategies. Some of these include iincreasing the number of publications coming from committee members, increasing the number of authors involved in IPTA-sponsored writing projects, expanding the scope of writing projects to include white papers and practice recommendations, and working with other IPTA committees on joint projects. The Publications committee plans to work on a Peer Mentoring program to help authors with backgrounds in languages other than English, to improve the quality of the language of their submissions. Finally, the Publications committee will take a leadership role in the quarterly IPTA newsletter, working with the other committees to provide content that is interesting and relevant to the IPTA membership.