Сompliance with Therapy in Patients with von Willebrand's Disease in Russia.

N. Zozulya¹, N. Andreev¹, O. Belyakova², A. Korobkin³, K. Farizova³, E. Noskova⁴, N. Beksheneva⁵, E. Ursulenko⁶, J. Hammerschmidt⁷, J. Rozhdestvenskaya⁸, V. Sibirtseva⁹, E. Komartseva¹⁰, E. Oganesyan¹¹, Y. Nered’ko¹², L. Romanenko¹², O. Leshina¹³, O. Serdyuk¹⁴, K. Elgakaeva¹⁵, Z. Yasakova¹⁵, O. Yastrubinetskaya¹⁶

¹National Research Center for Hematology, Moscow, Moskva, Russia, ²Morozovskaya Children's Hospital of the Department of Health of Moscow, Moscow, Moskva, Russia, ³State Budget-Funded Health Care Institution Chelyabinsk Regional Clinical Hospital, Chelyabinsk, Sverdlovsk, Russia, ⁴Kirov Regional Clinical Hospital, Kirov, Russia, Kirov, Kirov, Russia, ⁵Children's Republican Clinical Hospital of the Ministry of Health of the Republic of Tatarstan, Kazan, Russia, Kazan, Tatarstan, Russia, ⁶Irkutsk State Regional Children's Clinical Hospital, Irkutsk, Russia, Irkutsk, Irkutsk, Russia, ⁷Tomsk Regional Clinical Hospital, Tomsk, Russia, Tomsk, Tomsk, Russia, ⁸Kemerovo City Children’s Cliinical Hospital №7, Kemerovo, Russia, Kemerovo, Kemerovo, Russia, ⁹State Novosibirsk Regional Clinical Hospital, Novosibirsk, Russia, Novosibirsk, Novosibirsk, Russia, ¹⁰Rostov Regional Clinical Hospital, Rostov-on-Don, Russia, Rostov, Rostov, Russia, ¹¹Stavropol Regional Clinical Oncological Dispensary, Stavropol, Russia, Stavropol', Stavropol', Russia, ¹²Regional children clinical Hospital, Stavropol, Russia, Stavropol', Stavropol', Russia, ¹³Volgograd Regional Clinical Hospital №1, Volgograd, Russia, Volgograd, Volgograd, Russia, ¹⁴Clinical Oncological dispensary №1, Krasnodar, Russia, Krasnodar, Rostov, Russia, ¹⁵Republican Children's Clinical Hospital named after E.P. Glinka, Grozny, Russia, Grozniy, Karachay-Cherkess, Russia, ¹⁶National Research Center for Hematology, Moscow, Russia, Moscow, Moskva, Russia

Abstract Number: VPB0844

Meeting: ISTH 2022 Congress

Theme: Platelet Disorders, von Willebrand Disease and Thrombotic Microangiopathies » VWF and von Willebrand Factor Disorders - Clinical Conditions

Background: von Willebrand’s disease (VWD) is characterized by a significantly lower number of life-threatening bleeding and a slight decrease in the quality of life. This imposes a number of features on compliance. To explore the situation in Russia, the Russian National Research Center for Hematology initiated this research in several regions.

Aims: To identify issues of VWD disease treatment that can be improved to preserve the quality of life and improve compliance.

Methods: Interviewing patients with VWD by phone or in person at the clinic. The questions included information on social status, anamnestic information on diagnosis, effectiveness and convenience of substitution therapy.

Results: 18 centers for hematology participated in the study of total. 277 patients took a part in it: 116 male, 158 female and 3 didn’t answer the question. The average age of respondents is 27.6±18.0 y.o. Most respondents were diagnosed more than 5 years ago (58.8%), 3-5y.a. was 17.3%, 1-3y.a. was 17.0%, less than 1 year ago 6.9%. 32.9% of respondents do not remember their type of VWD, 36.5% have 1 type, 18.8% have 2 type and 11.9% have the 3 type of disease. Most of the respondents work or study 69.0%. The 2/3 of responders (66.5%) were hospitalized due to bleeding in the last 3 years. Only half of them (52.2%) had therapy corrected after. 46.2% of respondents bleedings are reduces the quality of life. 15.9% follow only half of the doctor’s recommendations and 3.4% do not follow them at all. Completely satisfied with the therapy are 53.1% of the respondents. However, 8.7% consider the therapy to be insufficiently effective.

Conclusion(s): The survey identified a need for work aimed at increasing patients’ adherence to therapy, educate patients about intravenous injections. Communication between the patient and the doctor and timely correction of therapy could improve compliance as well.

To cite this abstract in AMA style:

Zozulya N, Andreev N, Belyakova O, Korobkin A, Farizova K, Noskova E, Beksheneva N, Ursulenko E, Hammerschmidt J, Rozhdestvenskaya J, Sibirtseva V, Komartseva E, Oganesyan E, Nered’ko Y, Romanenko L, Leshina O, Serdyuk O, Elgakaeva K, Yasakova Z, Yastrubinetskaya O. Сompliance with Therapy in Patients with von Willebrand’s Disease in Russia. [abstract]. https://abstracts.isth.org/abstract/%d1%81ompliance-with-therapy-in-patients-with-von-willebrands-disease-in-russia/. Accessed October 1, 2023.

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