Multidisciplinary care in haemoglobinopathies

Abstract

While most complications are related to haemoglobinopathies and their treatment, it is also possible to observe substantial differences in comorbidities’ onset and seriousness which depend also to the different HPs genotypes. These differences should be carefully considered when health authorities set up and manage adequate care systems and treatments plans. We describe services organisation in Italy including the availability of multispecialty care and tools, in the HPs units participating to the HTA-THAL Multiregional Registry, with the aim to derive the impact of the services and multispecialty care availability on the management of the disease and on the patients wellbeing. The high dispersion and heterogeneity of services demonstrated, exposes the Italian system to a high risk of: a) inappropriate use of economical and medical resources, b) limited access to multidisciplinary care of some patients with apparent inequality among different centres, and c) low patients satisfaction with the services provided. The identification of a ‘standard for HPs services’ is necessary not only at national but also at interventional level in order to implement collaborative research and the identification and networking of reference’ centres worldwide. Following the big efforts provided in the last years here there is a new challenging mission for the TIF.

Keywords

• haemoglobinopathies
• HPs genotypes
• Thalassaemia major
• Sickle cell disease
• Transfusion dependent
• Non-transfusion dependent.