Pascau María Jesús, Pruneda Laura, de Barbieri Ilaria, Correia Matilde, López Belén, Guijarro Erika, Sofío Gonzalo, Frauca Remacha Esteban, Jara Vega Paloma
ERN-Transplantchild, La Paz Institute of Biomedical Research, IdiPAZ, Hospital Universitario La Paz, 28046 Madrid, Spain.
Azienda Ospedaliera di Padova, 35128 Padova, Italy.
Children (Basel). 2021 Aug 24;8(9):723. doi: 10.3390/children8090723.
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.
社会福祉是当前健康概念的一个内在组成部分。在慢性病背景下，为患者及其家庭提供社会福祉面临诸多挑战，若涉及罕见病则更是如此。欧洲儿科移植参考网络（ERN）“移植儿童”致力于提高接受移植儿童的生活质量。若缺乏人力和物力资源，就不可能提高生活质量。通过这项研究，我们希望确定不同欧洲中心向家庭提供的经济援助、设施、服务和资助产品。我们还想了解谁提供这些资源以及获取这些资源的难易程度。我们使用欧盟调查软件工具设计了一项专门调查。该调查发送给了26个ERN成员的代表。在本文中，我们展示了在分析的两个方面所获得的结果：长期经济援助以及药品、药剂和医疗器械。一些资源在所有参与中心都同样可得，但在其他方面存在显著差异，比如教育援助或辅助药品产品资助。对这些差异进行局部分析对于为欧洲所有接受移植儿童创造平等机会找到可行解决方案而言是必要的。已经成功提供某些解决方案的中心的经验可能会促进这些解决方案在其他医院的实施。
