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  • Turner EM
  • Cassidy AR
  • Rea KE
  • Smith-Paine JM
  • Wolfe KR
Child Neuropsychol. 2024 Apr;30(3):503-537 doi: 10.1080/09297049.2023.2221759.

The incidence of pediatric solid organ transplantation (SOT) has increased in recent decades due to medical and surgical advances as well as improvements in organ procurement. Survival rates for pediatric kidney, liver, and heart transplantation are above 85% but patients continue to experience complex healthcare needs over their lifetime. Long-term developmental and neuropsychological sequelae are becoming increasingly recognized in this population, although preliminary work is limited and deserves further attention. Neuropsychological weaknesses are often present prior to transplantation and may be related to underlying congenital conditions as well as downstream impact of the indicating organ dysfunction on the central nervous system. Neuropsychological difficulties pose risk for functional complications, including disruption to adaptive skill development, social-emotional functioning, quality of life, and transition to adulthood. The impact of cognitive dysfunction on health management activities (e.g., medication adherence, medical decision-making) is also an important consideration given these patients' lifelong medical needs. The primary aim of this paper is to provide preliminary guidelines and clinical strategies for assessment of neuropsychological outcomes across SOT populations for pediatric neuropsychologists and the multidisciplinary medical team, including detailing unique and shared etiologies and risk factors for impairment across organ types, and functional implications. Recommendations for clinical neuropsychological monitoring as well as multidisciplinary collaboration within pediatric SOT teams are also provided.

  • Yamada M
  • L'Huillier AG
  • Green M
J Pediatric Infect Dis Soc. 2024 Feb 28;13(Supplement_1):S31-S38 doi: 10.1093/jpids/piad097.

Epstein-Barr Virus (EBV) diseases, including EBV-associated post-transplant lymphoproliferative disorder (PTLD) remain important causes of morbidity and mortality in children undergoing solid organ transplantation (SOT) and hematopoietic cell transplantation (HCT). Despite progress in the prevention of EBV disease including PTLD (EBV/PTLD) in HCT, key questions in the prevention, and management of these infectious complications remain unanswered. The goal of this manuscript is to highlight key points and recommendations derived from the consensus guidelines published by the International Pediatric Transplant Association and the European Conference on Infections in Leukemia for children undergoing SOT and HCT, respectively. Additionally, we provide background and guidance on the use of EBV viral load measurement in the prevention and management of these children.

  • Preiksaitis J
  • Allen U
  • Bollard CM
  • Dharnidharka VR
  • Dulek DE
  • et al.
Pediatr Transplant. 2024 Feb;28(1):e14471 doi: 10.1111/petr.14471.

The International Pediatric Transplant Association convened an expert consensus conference to assess current evidence and develop recommendations for various aspects of care relating to post-transplant lymphoproliferative disorders after solid organ transplantation in children. In this report from the Viral Load and Biomarker Monitoring Working Group, we reviewed the existing literature regarding the role of Epstein-Barr viral load and other biomarkers in peripheral blood for predicting the development of PTLD, for PTLD diagnosis, and for monitoring of response to treatment. Key recommendations from the group highlighted the strong recommendation for use of the term EBV DNAemia instead of "viremia" to describe EBV DNA levels in peripheral blood as well as concerns with comparison of EBV DNAemia measurement results performed at different institutions even when tests are calibrated using the WHO international standard. The working group concluded that either whole blood or plasma could be used as matrices for EBV DNA measurement; optimal specimen type may be clinical context dependent. Whole blood testing has some advantages for surveillance to inform pre-emptive interventions while plasma testing may be preferred in the setting of clinical symptoms and treatment monitoring. However, EBV DNAemia testing alone was not recommended for PTLD diagnosis. Quantitative EBV DNAemia surveillance to identify patients at risk for PTLD and to inform pre-emptive interventions in patients who are EBV seronegative pre-transplant was recommended. In contrast, with the exception of intestinal transplant recipients or those with recent primary EBV infection prior to SOT, surveillance was not recommended in pediatric SOT recipients EBV seropositive pre-transplant. Implications of viral load kinetic parameters including peak load and viral set point on pre-emptive PTLD prevention monitoring algorithms were discussed. Use of additional markers, including measurements of EBV specific cell mediated immunity was discussed but not recommended though the importance of obtaining additional data from prospective multicenter studies was highlighted as a key research priority.

  • Wilkinson JD
  • Allen U
  • Green M
  • Dipchand AI
  • Dharnidharka VR
  • et al.
Pediatr Transplant. 2024 Feb;28(1):e14333 doi: 10.1111/petr.14333.

The International Pediatric Transplant Association (IPTA) Consensus Conference on Practice Guidelines for the Diagnosis, Prevention, and Management of Post-Transplant Lymphoproliferative Disorders after Solid Organ Transplantation in Children took place on March 12-13, 2019, and the work of conference members continued until the end of December 2021. The goal was to produce evidence-based consensus guidelines on the definitions, diagnosis, prevention, and management of PTLD and related disorders based on the critical review of the literature and consensus of experts. This report describes the goals, organization, and methodology of the consensus conference and follow-up activities. The results of each working group (Definitions, Prevention, Management, and Epstein-Barr viral [EBV] load/Biomarker Monitoring) are presented in separate manuscripts within this volume of Pediatric Transplantation.

  • Freeman MA
  • Botha J
  • Brewer E
  • Damian M
  • Ettenger R
  • et al.
Pediatr Transplant. 2023 Feb;27 Suppl 1:e14358 doi: 10.1111/petr.14358.

A position statement of the International Pediatric Transplant Association endorsing prioritizing pediatric recipients for deceased donor organ allocation, examining the key ethical arguments that serve as the foundation for that position, and making specific policy recommendations to support prioritizing pediatric recipients for deceased donor organ allocation globally.

  • da Silva Knihs N
  • Schuantes Paim SM
  • Dos Santos J
  • Dos Reis Bellaguarda ML
  • Silva L
  • et al.
J Pediatr Nurs. 2022 May-Jun;64:56-63 doi: 10.1016/j.pedn.2022.01.010.
PURPOSE:

to develop a care bundle for best practices in conducting the family interview for organ and tissue donation with the families of children and adolescents.

DESIGN AND METHODS:

methodological study, with a qualitative approach, developed in Brazil, in three stages: literature review, qualitative study with professionals and family members, and development of the care bundle.

RESULTS:

Nine studies were selected and 17 health professionals and nine family members were interviewed. With this data, the care bundle was developed in three categories: communication of death, emotional support and information about organ and tissue donation. The recommendations were evaluated by five external professionals and all of them assessed the bundle as having the highest possible quality.

CONCLUSIONS:

the care bundle was built following the stages of integrative literature review and interviews with professionals working in this scenario and family members who have already gone through a family interview for organ and tissue donation of children and adolescents.

PRACTICE IMPLICATIONS:

the use of this material is seen as an important resource to support the professional during the conduction of the family interview in a scenario as sensitive and challenging as the care to family members facing death and the decision of organ and tissue donation of children and adolescents. Furthermore, the care bundle can increase the quality of family interviews and impact the reduction of family refusals.

DESCRIPTORS:

Practice Guideline as Topic. Tissue and Organ Procurement. Patient Care Team. Nursing. Pediatrics. Communication.

  • Dudley J
  • Christian M
  • Andrews A
  • Andrews N
  • Baker J
  • et al.
BMC Nephrol. 2021 Sep 16;22(1):312 doi: 10.1186/s12882-021-02460-5.
  • Lentine KL
  • Pastan S
  • Mohan S
  • Reese PP
  • Leichtman A
  • et al.
Am J Kidney Dis. 2021 Sep;78(3):319-332 doi: 10.1053/j.ajkd.2021.05.007.

Over the past 65 years, kidney transplantation has evolved into the optimal treatment for patients with kidney failure, dramatically reducing suffering through improved survival and quality of life. However, access to transplant is still limited by organ supply, opportunities for transplant are inequitably distributed, and lifelong transplant survival remains elusive. To address these persistent needs, the National Kidney Foundation convened an expert panel to define an agenda for future research. The key priorities identified by the panel center on the needs to develop and evaluate strategies to expand living donation, improve waitlist management and transplant readiness, maximize use of available deceased donor organs, and extend allograft longevity. Strategies targeting the critical goal of decreasing organ discard that warrant research investment include educating patients and clinicians about potential benefits of accepting nonstandard organs, use of novel organ assessment technologies and real-time decision support, and approaches to preserve and resuscitate allografts before implantation. The development of personalized strategies to reduce the burden of lifelong immunosuppression and support "one transplant for life" was also identified as a vital priority. The panel noted the specific goal of improving transplant access and graft survival for children with kidney failure. This ambitious agenda will focus research investment to promote greater equity and efficiency in access to transplantation, and help sustain long-term benefits of the gift of life for more patients in need.

  • Bergan S
  • Brunet M
  • Hesselink DA
  • Johnson-Davis KL
  • Kunicki PK
  • et al.
Ther Drug Monit. 2021 Apr 1;43(2):150-200 doi: 10.1097/FTD.0000000000000871.

When mycophenolic acid (MPA) was originally marketed for immunosuppressive therapy, fixed doses were recommended by the manufacturer. Awareness of the potential for a more personalized dosing has led to development of methods to estimate MPA area under the curve based on the measurement of drug concentrations in only a few samples. This approach is feasible in the clinical routine and has proven successful in terms of correlation with outcome. However, the search for superior correlates has continued, and numerous studies in search of biomarkers that could better predict the perfect dosage for the individual patient have been published. As it was considered timely for an updated and comprehensive presentation of consensus on the status for personalized treatment with MPA, this report was prepared following an initiative from members of the International Association of Therapeutic Drug Monitoring and Clinical Toxicology (IATDMCT). Topics included are the criteria for analytics, methods to estimate exposure including pharmacometrics, the potential influence of pharmacogenetics, development of biomarkers, and the practical aspects of implementation of target concentration intervention. For selected topics with sufficient evidence, such as the application of limited sampling strategies for MPA area under the curve, graded recommendations on target ranges are presented. To provide a comprehensive review, this report also includes updates on the status of potential biomarkers including those which may be promising but with a low level of evidence. In view of the fact that there are very few new immunosuppressive drugs under development for the transplant field, it is likely that MPA will continue to be prescribed on a large scale in the upcoming years. Discontinuation of therapy due to adverse effects is relatively common, increasing the risk for late rejections, which may contribute to graft loss. Therefore, the continued search for innovative methods to better personalize MPA dosage is warranted.

  • Pace RC
  • Kirk J
J Acad Nutr Diet. 2021 Mar;121(3):529-544.e56 doi: 10.1016/j.jand.2020.10.012.

Nephrology nutrition encompasses therapeutic and preventive nutrition care for individuals through the life cycle and addresses a variety of kidney disorders. Most nephrology nutrition practice focuses on care of individuals with chronic kidney disease, those on dialysis, and recipients of kidney transplants. The Renal Dietitians Dietetic Practice Group, National Kidney Foundation Council on Renal Nutrition, along with the Academy of Nutrition and Dietetics Quality Management Committee, have revised the Standards of Practice (SOP) and Standards of Professional Performance (SOPP) for RDNs working in nephrology nutrition. The SOP and SOPP for RDNs in Nephrology Nutrition provide indicators that describe three levels of practice: competent, proficient, and expert. The SOP uses the Nutrition Care Process and clinical workflow elements for delivering patient/client care. The SOPP describes the following six domains that focus on professional performance: Quality in Practice, Competence and Accountability, Provision of Services, Application of Research, Communication and Application of Knowledge, and Utilization and Management of Resources. Specific indicators outlined in the SOP and SOPP depict how these standards apply to practice. The SOP and SOPP are complementary resources for RDNs and are intended to be used as a self-evaluation tool for assuring competent practice in nephrology nutrition and for determining potential education and training needs for advancement to a higher practice level in a variety of settings.