EPIDEMIOLOGY OF HEREDITARY COAGULOPATHIES IN RUSSIA- PATIENT-REPORTED DATA. INTERMEDIATE RESULTS. PART 2
Author(s)
Pavel Vorobyev, MD, PhD, Head of Department1, Oleg Borisenko, MD, Executive Director2, Urij Zhulev, NA, President3, Konstantin Kopylov, MD, PhD, Medical Officer4, Elena Telnova, PhD, Deputy of Head5, Artyom Tonoyan, NA, Manager21Moscow Medical Academy named after I.M.Sechenov, Moscow, Russia; 2 Russian Society for Pharmacoeconomics and Outcomes Research, Moscow, Russia; 3 All-Russian Hemophilia Society, Moscow, Russia; 4 Hematological Research Center, Moscow, Russia; 5 Roszdravnadzor, Moscow, Russia
OBJECTIVES: The Government of the Russian Federation provide up to US$377 million to the management of hereditary coagulopathies (hemophilia type A and type B, von Willebrand's disease) since 2008. The amount of financing to the custom of coagulation factors increased 20 times more for 2004-2008. At the present time, an aggregate 3.49 IU of clotting factor VIII falls on one citizen of Russia. Russian Society of Pharmacoeconomics and Outcomes Research jointly with All-Russian Hemophilia Society made the first in Russia postal survey of all registered Russian patients with coagulopathies for the purpose of determining epidemiology of disease, treatment modalities. METHODS: The postal survey of 6309 patients was made in December 2007 – January 2008. This questionnaire contained questions on factor level and presence of antibodies, the last date determination of factor level and antibodies to it, number of bleeding by last month, number of introductions of coagulation factors, used medications, way of administering medications, and a number of emergency calls, hospitalizations. The patients’ education and employment data was also collected. RESULTS: A total of 1030 (16.3%) completed questionnaires were received by May 11, 2008. Forty-eight questionnaires were excluded from analysis because of absence of the key data. A total of 520 questionnaires were analyzed, and 462 questionnaires are under analyses now. A total of 661 (10.5%) blank questionnaires were returned (due to death, changing place of living). Only one-third of patients of 520 (36.5%) administer the medication with proper frequency. The median of administration of coagulation factors per month among patients with hemophilia was 6. The medium frequency of emergency calling in month per patient was equal to 0.36. The median frequency of hospitalization in month per patient was 0.17. A total of 57.6% of patients report the injections of medications on their own or by family members. A total of 20.2% of patients undergo the injections in out-patient clinics. More then 2/3 of patients use home and out-patient treatment. Seven percent of patients receive components of human plasma: cryoprecipitate (4.4%) and fresh frozen plasma (3,1%). 25,6% of the patients report having virus hepatitis, 14% of patients have problems with joint (arthrosis, arthritis, anchylosis and contractures). CONCLUSIONS: Intermediate results of the survey show a very low rate of using proper prophylactic scheme of administration of medications in patients with hemophilia (36.5%), in spite of presence of appropriate standards. The rate of emergency calls and hospitalizations is comparatively high. The majority of patients administer factors on their own or in out-patient clinics. The rate of administration of plasma components is still high. It increases the risk of contamination with transmitting infections. One-quarter of patients demonstrate the presence of serious complications: hepatitis or joints diseases.
Conference/Value in Health Info
2008-11, ISPOR Europe 2008, Athens, Greece
Value in Health, Vol. 11, No. 6 (November 2008)
Code
PSY48
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Systemic Disorders/Conditions
Explore Related HEOR by Topic