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In Press: In Finland haemophilia quality of care is high and has reasonable costs


Finnish Haemophilia patients have comprehensive followup and most receive factor replacement therapy, shows the results from the HemoHEOR study which was published this week in Haemophilia journal. The study provides the first detailed analysis of healthcare resource utilization and direct costs of haemophilia care in adult patients in real‐life clinical practice in Finland.

Haemophilia is an X-linked, chronic bleeding disorder, resulting from lack or deficiency of blood clotting factors. Haemophilia A (HA) is the most common type of haemophilia, affecting approximately 180 adults in Finland, while haemophilia B (HB) affects approximately 60 adults. Patients with haemophilia experience spontaneous and trauma-induced bleeding into joints or muscles, and are at increased risk of life-threatening intracranial bleedings. Recurrent bleeding may result in permanent disability in patients with haemophilia.

As a rare disease, haemophilia treatment requires highly specific and multidisciplinary expertise. The European Principles of Haemophilia Care recommends centralizing treatment to special healthcare units, which are located in the five university hospitals in Finland. The aim of haemophilia treatment is to prevent bleedings and permanent disability. The cornerstone, and main cost, of treatment is lifelong coagulation factor replacement therapy. In recent years, the haemophilia treatment landscape has changed rapidly, as several new products have been launched. Understanding of current treatment practices and costs of care plays a key role in the development of future haemophilia care.

The objective of the nationwide HemoHEOR study was to characterize clinical practice, treatment costs, and treatment outcomes of adult haemophilia patients in a real‐world clinical setting. The 4‐year retrospective study is based on the unique, nationwide cohort, which consists of adult non‐inhibitor HA (n = 121) and HB (n = 37) patients managed in the Finnish university hospitals during 2012–2016. Data on demographic and clinical variables, health care visits, and operations were collected from electronic health records with the help of haematologists. The HA and HB patients were further classified based on disease severity (mild/moderate/severe) and treatment type (prophylaxis/on-demand factor replacement therapy).

Study results showed that most of the HA (79%) and HB (84%) patients received factor replacement therapy, either prophylactically or on-demand, during the follow-up period. Of patients with severe disease, 81% of HA and 78% of HB patients had prophylactic treatment. The median annual bleeding rate (ABR) was low, at 0.8 for HA and 0.5 for HB, and a third of the patients did not report any bleeding events during the follow‐up.

Over 96% of the HA patients and 97% of HB patients whose disease severity was documented had outpatient visits during the follow‐up period. Less than half of both HA (46%) and HB patients (43%) patients had inpatient visits and 13% of all patients had undergone a joint surgery. The factor replacement therapy accounted for about 97% of costs, with mean annual cost ranging from €22,109 to €175,643, depending on disease severity and treatment type. The mean total healthcare services costs varied from €520 to €8130.

In summary, the study indicates that centralizing haemophilia care has resulted in excellent outcomes in Finland: comprehensive follow‐up visits, high proportion of prophylaxis, low ABRs, and comparatively low mean annual treatment costs. The study results help to set future standards of haemophilia care in Finland in the rapidly evolving therapy landscape, where the focus is shifting increasingly towards individually tailored strategies

MedEngine conducted the study in collaboration with clinical experts from Helsinki, Turku, Tampere, Kuopio, and Oulu University Hospitals.


Ventola H, Vesikansa A, Jokelainen J, Siitonen T, Ettala P, Laine O, Lehtinen E, Lepäntalo A, Patronen M, Partanen A, Linna M, Ylisaukko‐oja T, Lassila R. Characterisation of healthcare utilisation and cost of haemophilia care in real‐life: A 4‐year follow‐up study in Finland. Haemophilia.

Aino Vesikansa

Aino Vesikansa

A passion for understanding the mystery of the human brain led Aino to become an expert in neuroscience. After receiving her PhD from the University of Helsinki, Aino has worked as a post-doctoral scientist and as a coordinator at the Scandinavian Physiological Society. Aino is also known for her popular scientific blog postings. Aino enjoys pushing herself outside the comfort zone, let it be challenging herself at work, seeking out new perspectives, or training endurance sports. For balance, she loves to design and bake imaginative cakes, which are highly appreciated by her colleagues.