Blood Transfusion Supplement 3 - Haemophilia Centre Accreditation Systems and Networks of Centres of Expertise for Rare Diseases in Europe and North America (off subscription) (April)
Definition of an organisational model for the prevention and reduction of health and social impacts of inherited bleeding disorders
Authors:  Gabriele Calizzani, Ivana Menichini, Fabio Candura, Monica Lanzoni, Samantha Profili, Maria Rita Tamburrini, Antonio Fortino, Stefania Vaglio, Giuseppe Marano, Giuseppina Facco, Emily Oliovecchio, Massimo Franchini, Antonio Coppola, Romano Arcieri, Cinzia Bon, Mario Saia, Sabina Nuti, Massimo Morfini, Giancarlo M. Liumbruno, Giovanni Di Minno, Giuliano Grazzini
Pages:  s582-s588
To cite this article:  Blood Transfus 2014; 12 Suppl 3: s582-8
Doi:  10.2450/2014.0087-14s
Published online:  06/05/2014

Introduction. Due to the increase in life expectancy, patients with haemophilia and other inherited bleeding disorders are experiencing age-related comorbidities that present new challenges. In order to meet current and emerging needs, a model for healthcare pathways was developed through a project funded by the Italian Ministry of Health. The project aimed to prevent or reduce the social-health burden of the disease and its complications.
Material and methods. The National Blood Centre appointed a panel of experts comprising clinicians, patients, National and Regional Health Authority representatives. Following an analysis of the scientific and regulatory references, the panel drafted a technical proposal containing recommendations for Regional Health Authorities, which has been formally submitted to the Ministry of Health. Finally, a set of indicators to monitor haemophilia care provision has been defined.
Results. In the technical document, the panel of experts proposed the adoption of health policy recommendations summarised in areas, such as: multidisciplinary integrated approach for optimal healthcare provision; networking and protocols for emergency care; home therapy; registries/databases; replacement therapy supply and distribution; recruitment and training of experts in bleeding disorders. The recommendations became the content of proposal of agreement between the Government and the Regions. Monitoring and evaluation of haemophilia care through the set of established indicators was partially performed due to limited available data.
Conclusions. The project provided recommendations for the clinical and organisational management of patient with haemophilia. A particular concern was given to those areas that play a critical role in the comorbidities and complications prevention. Recommendations are expected to harmonise healthcare care delivery across regional networks and building the foundation for the national haemophilia network.
Keywords: haemophilia care, clinical pathway, performance indicators.
Full Text Download Back
Share this article: