María Jesús Pascau

Mrs. María Jesús Pascau

ERN-Transplantchild Nurses Team Coordinator

Research Focus & Metrics

Academic Career Length

6Years (2021-Present)

(Calculated once Scilit publication data is synced: current year − year of first publication + 1)

Representative Publications

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24 August 2021 in Children
Verified
Journal Article
Open access
PDF file
MPMaría Jesús Pascau
María Jesús Pascau
LPLaura Pruneda
Laura Pruneda
IDIlaria DeBarbieri
Ilaria DeBarbieri
MCMatilde Correia
Matilde Correia
BLBelén López
Belén López
OGon behalf of ERN TransplantChild Healthcare Working Group
on behalf of ERN TransplantChild Healthcare Working Group
Social well-being is an intrinsic part of the current concept of health. In the context of chronic disease, there are many challenges we face in order to provide social well-being to patients and their families, even more if we talk about rare diseases. TransplantChild, a European Reference Network (ERN) in paediatric transplantation, works to improve the quality of life of transplanted children. It is not possible to improve the quality of life if the human and material resources are not available. With this study, we want to identify the economic aids, facilities, services, and financed products that are offered to families in different European centres. We also want to find out who provides these resources and the accessibility to them. We designed an ad hoc survey using the EU Survey software tool. The survey was sent to representatives of the 26 ERN members. In this article we present the results obtained in relation to two of the aspects analysed: long-term financial assistance and drugs, pharmaceuticals and medical devices. Some resources are equally available in all participating centres but there are significant differences in others, such as education aids or parapharmacy product financing. A local analysis of these differences is necessary to find feasible solutions for equal opportunities for all transplanted children in Europe. The experience of centres that already provide certain solutions successfully may facilitate the implementation of these solutions in other hospitals.