Social Resources for Transplanted Children and Families in European Union Hospitals of ERN TransplantChild

Abstract

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.

Keywords: ERN TransplantChild; children with special health care needs; chronic health conditions; long-term care; paediatric transplant; rare diseases; social support; socioeconomic factors.

Figure 1

Structure of the Social Resource Survey. General content of the six sections and number of items.

Figure 2

Period from date of application to arrival of aid (0–3, 4–6, 7–12, >12 months).

Figure 3

Economic aid for professional treatments (physiotherapy, speech therapy, early stimulation, psychological support, etc.). From left to right, availability, type of aid, and provider of these aids (n = 15).

Figure 4

Accessibility to medicines. From left to right, hospital pharmacy drugs, commercial pharmacy drugs, medical equipment, and paediatric doses. For 5.2 and 5.3, Y-axis, number of responses; X-axis, Likert scale (3 = acceptable, 4 = easy, 5 = very easy).

Figure 5

Funding of drugs, pharmaceutical and medical devices in participating centres. From left to right, (1) commercial pharmacy drugs, (2) pharmacy/parapharmacy products, (3) milk or nutritional products (4) medical devices, (5) other drugs. In green, yes; in grey, no; in white, not reported.