Haemophilia treatment in Finnish university hospitals is of excellent quality and at costs reasonable within European standards, shows the HemoHEOR study conducted by MedEngine that was recently published in Finnish Medical Journal. During the years 2012–2016, more than 80% of patients treated in the university hospitals received factor replacement therapy and 25% didn’t experience any bleeds.
Haemophilia is a rare X-linked hereditary bleeding disorder caused by a deficiency of either clotting factor VIII (haemophilia A) or factor IX (haemophilia B). Patients with mild haemophilia typically experience prolonged bleeding after trauma or surgery, but patients with moderate and severe haemophilia suffer from spontaneous joint and soft tissue bleeds and face the risk of life-threatening bleeding complications.
Haemophilia treatment is based on lifelong factor replacement therapy. Since the treatment of this rare disease requires highly specific and multidisciplinary expertise, The European Principles of Haemophilia Care recommends centralizing treatment to special healthcare units – in Finland, the five university hospitals.
The purpose of the HemoHEOR study was to assess clinical practice and costs of haemophilia care in Finland. With the help of expert clinicians, MedEngine collected treatment data from medical records on adult patients treated in Finnish university hospitals between 2012 and 2016. The nationwide HemoHEOR cohort consisted of 131 patients with haemophilia A and 37 patients with haemophilia B.
The HemoHEOR study found that, according to register data from the Finnish Institute for Health and Welfare, there were a total of 238 adult haemophilia patients being treated in public healthcare during the follow-up period. However, only about 70% of these patients were treated in a university hospital.
Study results indicated that 25% of patients treated in the university hospitals didn’t experience bleeds during the 4-year follow-up, and the median Annual Bleeding Rate in the cohort patients was low. More than 80% of patients in the cohort received factor replacement therapy.
The direct mean costs of treatment per year were €111,237 for patients with haemophilia A and €74,405 for patients with haemophilia B. For both haemophilia A and B, factor-replacement therapy accounted for 97% of annual direct costs.
According to the HemoHEOR study, the long-standing work of Finnish university hospitals in developing haemophilia care has led to excellent clinical outcomes. In addition to overall Annual Bleeding Rates being low, the percentage of patients with severe haemophilia receiving prophylaxis is above the European average and treatment costs remain reasonable. An essential goal in the future is to identify all Finnish haemophilia patients and centralize their treatment to university hospitals.
Ventola H, Vesikansa A, et al. Treatment of haemophilia and related costs in Finland. Finnish Medical Journal. 2020 Jan;75(1–2):45–49.