Paediatric transplantation (PT), both hematopoietic stem cell transplantation (HCST) and solid organ (SOT) has greatly improved survival in children with end-stage disease and malignancies, becoming the main treatment options in this population. PT approach requires a multidisciplinary team that supports the transplantation procedure in common processes. The aim is to describe the strategic approach of TRANSplantCHILD to the improvement of life expectancy and quality of life for EU paediatric patients.
TRANSplantCHILD is an European reference network (ERN) focuses on a low prevalent and complex clinical condition in children, the transplant and includes SOT and HSCT, with a specific `cross-cutting approach. TRANSplantCHILD aims are: (1) Ensuring their access through the network to the best possible care practices and support procedures related to a transversal and multidisciplinary approach to children´s transplant. (2) Developing and gathering efforts within the network for integrative, innovative and better procedures, information, training, knowledge and expertise. (3) Integrating stakeholders in the transplantation process and making available the knowledge and information.
As established in the Strategic approach of TRANSplantCHILD, the strategic areas have been approved in order to ensure the achievement of the mission and vision of the Network: (1) To improve patient healthcare; (2) To harmonise clinical best practices; (3) To harmonise research and innovation; (4) Spread knowledge; (5) Education and training; (6) Network organization, quality and safety. The crosscutting approach of TRANSplantCHILD allow improvement of the transplanted patient handling, their life expectancy and long-term quality of life of children and their family by: (1) preventive practices to anticipate and minimise patients’ risks; (2) Treatment standardisation; (3) Harmonisation of clinical best practices; (4) Improving chronicity approach and the treatment of secondary diseases related to PT; (5) The provision of psycho-social support in different phases of patients’ life; (6) The provision of grounds for patients’ empowerment.
TRANSplantCHILD integrates 18 Healthcare providers from 11 Members states (figure 1) which have proven experience in PT and addressing the related complications in order to gather the knowledge and experience available throughout Europe.
The holistic model ensures permanent efforts for the routinely implementation and standardization of the most recent improvements in the transplantation process as a whole (at pre-transplant, transplant and post-transplant stage).
The first case has been recently upload to the network from Hospital La Paz; Madrid, Spain in order to address a pre-HSCT question in a patient who previously received a deceased donor liver transplantation for a fulminant hepatitis in the context of a non-genetic hemophagocytosis syndrome
PT care constitutes yet a medical challenge due to the lack of robust data In comparison with the adult transplantation. TRANSplantCHILD focuses the PT as process approach instead of a disease/organ approach, developing an integrative model for share within the network the knowledge or expertise from highly specialised support and advice at national healthcare providers for the transplanted children.