(Vienna, 23-02-2023) On the occasion of Rare Disease Day on 28 February 2023, the University Hospital Vienna is drawing attention to a joint project of the European University Hospital Alliance (EUHA). As part of the Rare Diseases Network, the Department of Paediatrics and Adolescent Medicine at University Hospital Vienna and MedUni Vienna is currently working with experts from Europe's leading university hospitals on recommendations for how children and adolescents with chronic, usually complex rare diseases can be best prepared and supported for the transition to adult care.
"The transition from paediatric care to adult care is often very challenging for young patients with chronic diseases. The patients are used to a family setting in paediatrics and adolescent medicine, where the parents are significantly involved in the examinations and treatments. The young people rely on the family and the multidisciplinary team at the hospital," explains Susanne Greber-Platzer, Head of the Department of Paediatrics and Adolescent Medicine at University Hospital Vienna and MedUni Vienna and a member of the European University Hospital Alliance (EUHA) network for rare diseases.
In order for the smooth transition from paediatrics into adulthood once the child is of legal age, a longer preparation phase is required, which should begin as early as childhood. For example, children should understand their own disease from the start and recognise symptoms in connection with the underlying condition. In the course of time, adolescents should be taught to take care of medication and check-up appointments autonomously, for example. "Without adequate preparation, the change to the new care structure can become a dangerous spiral of discontinuity for chronically ill patients," says Greber-Platzer.
In order to prevent this potential interruption of the treatment, experts in paediatrics and adolescent medicine are focusing on the topic of transition within the framework of the network for rare diseases of the European University Hospital Alliance (EUHA). The group of experts from the ten leading university hospitals has set itself the goal of using international guidelines and best practice examples from European university hospitals to establish a common concept of how children and adolescents with chronic, mostly complex rare diseases can be best prepared and supported for the transition to adult care. In addition to questionnaires on the disease competence of the young patients and their parents, the concept will also address everyday challenges that accompany growing up and can make the transition to adult care more difficult, such as education, leisure activities, first own household and partnership. The experts agree that preparation and support must begin early and that patients must be sensitised as early as during paediatric care that they are responsible for themselves and thus also for their own health care from the age of majority. The recommendations for action involve experts from adult medicine and are to be evaluated in the university hospitals that are members of the EUHA in 2023.
A chain of lights for 300 million affected people
Around 300 million people worldwide are affected by a rare disease. As a sign of solidarity, the University Hospital Vienna and the Medical University of Vienna are participating in the "Global Chain of Lights" campaign around 28 February 2023 and illuminating their entrance areas in green, blue, pink and purple, the colours of the campaign.