title: Definition of an organisational model for the prevention and reduction of health and social impacts of inherited bleeding disorders.
abstract: BACKGROUND
  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.
  
  
  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.
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy.
authors.forename: Gabriele
authors.initials: G
authors.lastname: Calizzani
authors.affiliation: Italian Federation of Haemophilia Societies (FedEmo), Rome, Italy Necstep Studio Associato, Modena, Italy.
authors.forename: Ivana
authors.initials: I
authors.lastname: Menichini
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy.
authors.forename: Fabio
authors.initials: F
authors.lastname: Candura
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy IRCCS Ca' Granda Foundation Maggiore Policlinico Hospital, Milan, Italy.
authors.forename: Monica
authors.initials: M
authors.lastname: Lanzoni
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy.
authors.forename: Samantha
authors.initials: S
authors.lastname: Profili
authors.affiliation: Blood and Transplant Unit, Ministry of Health, Rome, Italy.
authors.forename: Maria Rita
authors.initials: MR
authors.lastname: Tamburrini
authors.affiliation: National Institute for Health, Migration and Poverty, Rome, Italy.
authors.forename: Antonio
authors.initials: A
authors.lastname: Fortino
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy Faculty of Medicine and Psychology, Sapienza University of Rome, Rome, Italy.
authors.forename: Stefania
authors.initials: S
authors.lastname: Vaglio
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy.
authors.forename: Giuseppe
authors.initials: G
authors.lastname: Marano
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy.
authors.forename: Giuseppina
authors.initials: G
authors.lastname: Facco
authors.affiliation: Department of Internal Medicine, University of Perugia, Perugia, Italy Italian Association of Haemophilia Centres (AICE), Florence, Italy.
authors.forename: Emily
authors.initials: E
authors.lastname: Oliovecchio
authors.affiliation: Department of Transfusion Medicine and Hematology, Carlo Poma Hospital, Mantua, Italy Italian Association of Haemophilia Centres (AICE), Florence, Italy.
authors.forename: Massimo
authors.initials: M
authors.lastname: Franchini
authors.affiliation: Regional Reference Centre for Coagulation Disorders, Federico II University Hospital, Naples, Italy Italian Association of Haemophilia Centres (AICE), Florence, Italy.
authors.forename: Antonio
authors.initials: A
authors.lastname: Coppola
authors.affiliation: Italian Federation of Haemophilia Societies (FedEmo), Rome, Italy.
authors.forename: Romano
authors.initials: R
authors.lastname: Arcieri
authors.affiliation: Veneto Region Health Authority, Venice, Italy.
authors.forename: Cinzia
authors.initials: C
authors.lastname: Bon
authors.affiliation: Veneto Region Health Directorate, Venice, Italy.
authors.forename: Mario
authors.initials: M
authors.lastname: Saia
authors.affiliation: Laboratorio Management e Sanità, Istituto di Management, Scuola Superiore Sant'Anna, Pisa, Italy.
authors.forename: Sabina
authors.initials: S
authors.lastname: Nuti
authors.affiliation: Italian Association of Haemophilia Centres (AICE), Florence, Italy.
authors.forename: Massimo
authors.initials: M
authors.lastname: Morfini
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy.
authors.forename: Giancarlo M
authors.initials: GM
authors.lastname: Liumbruno
authors.affiliation: Regional Reference Centre for Coagulation Disorders, Federico II University Hospital, Naples, Italy Italian Association of Haemophilia Centres (AICE), Florence, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Di Minno
authors.affiliation: National Blood Centre, National Institute of Health, Rome, Italy.
authors.forename: Giuliano
authors.initials: G
authors.lastname: Grazzini
mesh_terms: D000375:Aging; D025861:Blood Coagulation Disorders, Inherited / Q000191:economics / Q000628:therapy; D019058:Community Networks / Q000191:economics* / Q000458:organization & administration* / Q000592:standards; D017281:Cost of Illness; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D017146:Models, Organizational; D012959:Socioeconomic Factors