NFS-16. NOVEL AUSTRIAN CARE AND PREVENTION GUIDE FOR CHILDREN AND ADOLESCENTS WITH NF1

Abstract

Abstract BACKGROUND Unified strategies for the care of children and adolescents affected by Neurofibromatosis type 1 (NF1) are lacking in Europe. While ERN GENTURIS developed guidelines for the tumour surveillance and management in NF1, these recommendations do not cover all other aspects of the disease. This holds not only true on an international level, but also on the national level in Austria. Despite being a small country with a uniform health and social security system, approaches to patient care may be comparable but not identical. AIM In order to standardise and improve patient care for children with NF1 in Austria, a care and prevention sheet was developed. METHODS In close cooperation with the Austrian patient organisation NF Kinder the Austrian NF network was established. This network is composed of dedicated health-care providers (medical as well as psychosocial) involved in the care of patients with NF1 in ten Austrian centres as well as patient representatives, some of whom were also involved in drafting the novel ERN GENTURIS recommendations. This network undertook the task of reviewing existing guidelines and incorporate the national healthcare structure and best practice guidelines into a consensus document. RESULTS The recommendations were condensed into a single sheet that is divided in four sections: clinical examination, lab investigations, imaging, additional consultations. For each parameter, the document advises on the age specific intervals for screening. Furthermore, it indicates the appropriate time points during follow-up (e.g. at initial presentation, at transition, if clinically indicated, …). The recommendations thereby focus not only on the inherent tumour risk but address the broad spectrum of possible symptoms (such as orthopaedic or surgical), specifically emphasising also psychosocial and neurocognitive issues. CONCLUSION The novel Austrian care and prevention guide for children and adolescents with NF1 will facilitate uniform best practice care for affected kids on a national level