Definition of an organisational model for the prevention and reduction of health and social impacts of inherited bleeding disorders

被引：1

作者：

Calizzani, Gabriele ^{[1
]}

Menichini, Ivana ^{[2
,3
]}

Candura, Fabio ^{[1
]}

Lanzoni, Monica ^{[1
,4
]}

Profili, Samantha ^{[1
]}

Tamburrini, Maria Rita ^{[5
]}

Fortino, Antonio ^{[6
]}

Vaglio, Stefania ^{[1
,7
]}

Marano, Giuseppe ^{[1
]}

Facco, Giuseppina ^{[1
]}

Oliovecchio, Emily ^{[8
,9
]}

Franchini, Massimo ^{[9
,10
]}

Coppola, Antonio ^{[11
]}

Arcieri, Romano ^{[2
]}

Bon, Cinzia ^{[12
]}

Saia, Marco ^{[13
]}

Nuti, Sabina ^{[14
]}

Morfini, Massimo ^{[9
]}

Liumbruno, Giancarlo M. ^{[1
]}

Di Minno, Giovanni ^{[11
]}

Grazzini, Giuliano ^{[1
]}

机构：

[1] Natl Inst Hlth, Natl Blood Ctr, Rome, Italy

[2] Italian Federat Haemophilia Soc FedEmo, Rome, Italy

[3] Necstep Studio Associato, Modena, Italy

[4] IRCCS Ca Granda Fdn Maggiore Policlin Hosp, Milan, Italy

[5] Minist Hlth, Blood & Transplant Unit, Rome, Italy

[6] Natl Inst Hlth Migrat & Poverty, Rome, Italy

[7] Univ Roma La Sapienza, Fac Med & Psychol, I-00185 Rome, Italy

[8] Univ Perugia, Dept Internal Med, I-06100 Perugia, Italy

[9] Italian Assoc Haemophilia Ctr AICE, Florence, Italy

[10] Carlo Poma Hosp, Dept Transfus Med & Hematol, Mantua, Italy

[11] Federico II Univ Hosp, Reg Reference Ctr Coagulat Disorders, Naples, Italy

[12] Veneto Reg Hlth Author, Venice, Italy

[13] Veneto Reg Hlth Directorate, Venice, Italy

[14] Scuola Super Sant Anna, Ist Management, Lab Management & Santa, Pisa, Italy

来源：

BLOOD TRANSFUSION | 2014年 / 12卷

关键词：

haemophilia care; clinical pathway; performance indicators; FACTOR-VIII; FACTOR-IX; MEDICINAL PRODUCTS; UNCERTAIN TIMES; HEMOPHILIA; ACCREDITATION; THROMBOSIS; CARE;

D O I：

10.2450/2014.0087-14s

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

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 HealthAuthority 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.

引用

页码：S582 / S588

页数：7

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