2 Organization of hemophilia care
1 Introduction
The Nordic hemophilia care has a strong tradition ever since treatment with factor concentrate was initiated in Malmö, Sweden, in the 1950:ies and has paved the way for the hemophilia treatment worldwide.
The Nordic Hemophilia council platform (since 1999) presents uniform recommendations for the diagnosis and management of coagulation disorders (www.nordichemophilia.org). The Council provides guideline documents, organizes annual meetings and forms working groups to address topical issues.
European Association of Hemophilia and Allied Disorders (EAHAD) is the umbrella under which the Nordic Hemophilia care is networked with the other European major centers.
European Hemophilia Comprehensive care centers (EHCCC) organizes the lifetime services provided by different disciplines around the patient’s medical needs (www.eahad.org).
European Hemophilia Centers are of two types according to the services and facilities which they provide: European Haemophilia Treatment Centres (EHTCs) provide local routine care in conjunction with EHCCCs. European Haemophilia Comprehensive Care Centres (EHCCCs) provide the highest level of care and function as tertiary referral centres.
2 Responsibilities of the Nordic CCC’s
The Nordic hemophilia comprehensive care centers have the following responsibilities:
To provide expert care, including regular replacement therapy or prophylaxis to avoid unnecessary bleeding complications.
To provide on call services that secures expert management during emergency severe illnesses, major trauma and surgical interventions.
To provide early diagnosis, pediatric and family care, through the adolescent years and transition clinics, genetic counseling, including attention to carrier and obstetric issues.
To prospectively update patient registers nationally as well as the safety surveillance at the European level by EUHASS (European Haemophilia and Allied Disorders Safety Surveillance).
3 Responsibilities of the laboratory
One of the key players in the comprehensive care is the coagulation laboratory. In interaction with the hemophilia treaters It has the following responsibilities in hemophilia care:
To establish the diagnosis of hemophilia.
To provide assays to monitor prophylaxis, treatment of bleeds and management of major surgery with factor and non factor treatment and appropriate follow-up.
To provide diagnosis of the complications of hemophilia, i.e. inhibitors.
4 Activities of the Nordic CCC’s
4.1 Networking activities
Since our Nordic populations are concentrated in the large cities, networking activities are needed to provide access to care outside the cities.
However, the Nordic cooperation has been ongoing since decades, over 50 years by organizing Nordic Coagulation meetings where bleeding disorders have always been included.
4.2 Multidisciplinary activities
According to the recommendations of World Federation of Hemophilia and EAHAD, multidisciplinary activities should be readily available for patients with hemophilia.
These CCC activities have been shown not only to reduce mortality but decrease morbidity, improve quality of life and days of absence from school and work.
Management of joint disease, rehabilitation, and planning for interventions as a multi-expert effort should be well coordinated.
Also, carrier, obstetric and perinatology issues need predesigned approach, written plans and consultation chains with multidisciplinary activities.
4.3 Registers and future development of hemophilia care
Scandinavian centers have actively conducted and participated in hemophilia studies, including issues of inhibitor development and novel therapies.
For the future the developing non-factor and gene therapies represent a significant progress, where joint platforms and registries are needed.
The health economy of the current therapy in the era of the novel non-replacement therapies is an important task, which by linking the register data on patient follow-up and outcome can unravel the cost efficiency.
4.4 RECOMMENDATION
The national register capturing should be developed uniformly to enable comparison of treatment across centers and ease patient entering to into clinical studies.
The treaters should raise active awareness of the costs of the treatment and look for the most cost-efficient individual solutions.