The natural evolution of haemophilia care: developing and sustaining comprehensive care globally

被引：44

作者：

Evatt, BL ^{[1
]}

机构：

[1] World Federat Hemophilia, Vice President Programs, Atlanta, GA 30345 USA

来源：

HAEMOPHILIA | 2006年 / 12卷

关键词：

haemophilia; cost of care; haemophilia treatments centres; physician shortage; health resource utilization; haemophilia care advocacy;

D O I：

10.1111/j.1365-2516.2006.01256.x

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Comprehensive care is vital for patients with haemophilia to prevent early death and free patients from the complications that inhibit living normal lives. Experience has shown that once introduced in a country, there is a progressive restoration of normal healthy lives to the haemophilia community. Accompanying this progress is a gradual decreased dependency on the haemophilia comprehensive centre - except during brief periods when expertise contained within the comprehensive centre is mandatory for life-saving clinical management or to prevent severe morbidity. During each stage of the natural evolution of comprehensive haemophilia care in a country, challenges to the existence of the centre occur, which threaten the comprehensive treatment concept. The haemophilia community must understand this natural evolution and be prepared to work collaboratively with governments, physicians and other patients to ensure that centres retain the expertise to meet the emergent needs when they arise.

引用

页码：13 / 21

页数：9

共 46 条

[11] Emerging and receding risks of therapeutic regimens for haemophilia [J].

Farrugia, A ;

Manno, CS ;

Evatt, BL .

HAEMOPHILIA, 2004, 10 :47-54

[12]

Globe D, 2001, INT J PEDIAT HEM ONC, V7, P87

[13] Utilization of care in haemophilia: a resource-based method for cost analysis from the Haemophilia Utilization Group Study (HUGS) [J].

Globe, DR ;

Curtis, RG ;

Koerper, MA .

HAEMOPHILIA, 2004, 10 :63-70

[14] The Hemophilia Utilization Group Study (HUGS): determinants of costs of care in persons with haemophilia A [J].

Globe, DR ;

Cunningham, WE ;

Andersen, R ;

Dietrich, SL ;

Curtis, RG ;

Parish, KL ;

Miller, RT ;

Sanders, NL ;

Kominski, G .

HAEMOPHILIA, 2003, 9 (03) :325-331

[15]

GROWE G, 1995, CAN MED ASSOC J, V153, P19

[16]

HASHIM A, 2003, WFH HEMOPHILIA ORG D, V3

[17]

Hoots W Keith, 2003, Curr Hematol Rep, V2, P395

[18]

Isarangkura P, 1993, Southeast Asian J Trop Med Public Health, V24 Suppl 1, P61

[19]

JONES P, 1992, HAEMOSTASIS, V22, P247

[20] HEMOPHILIA IN THE 1990S - PRINCIPLES OF MANAGEMENT AND IMPROVED ACCESS TO CARE [J].

KASPER, CK ;

MANNUCCI, PM ;

BULYZHENKOV, V ;

BRETTLER, DB ;

CHUANSUMRIT, A ;

HEIJNEN, L ;

ISARANKURA, P ;

KERNOFF, PBA ;

PEAKE, I ;

RICKARD, KA ;

SCHULMAN, S ;

SIBINGA, CTS .

SEMINARS IN THROMBOSIS AND HEMOSTASIS, 1992, 18 (01) :1-10

← 1 2 3 4 5 →