VPB0844 - Сompliance with Therapy in Patients with von Willebrand's Disease in Russia.

Monday, July 11, 2022

6:30 PM – 7:30 PM

Location: Exhibition

Presentation Format: Virtual

Presenting Author(s)

NZ

Nadezhda Zozulya, PhD

Head of the Department
National Research Center for Hematology
Moscow, Moskva, Russia

Co-Author(s)

NA

Nikolay Andreev

Hematologist
National Research Center for Hematology
Moscow, Moskva, Russia
OB

Olga Belyakova

hematologist
Morozovskaya Children's Hospital of the Department of Health of Moscow
Moscow, Moskva, Russia
AK

Alexander Korobkin

hematologist
State Budget-Funded Health Care Institution Chelyabinsk Regional Clinical Hospital
Chelyabinsk, Sverdlovsk, Russia
KF

Kiriena Farizova

hematologist
State Budget-Funded Health Care Institution Chelyabinsk Regional Clinical Hospital
Chelyabinsk, Sverdlovsk, Russia
EN

Evgeniya Noskova

hematologist
Kirov Regional Clinical Hospital, Kirov, Russia
Kirov, Kirov, Russia
NB

Natalia Beksheneva

hematologist
Children's Republican Clinical Hospital of the Ministry of Health of the Republic of Tatarstan, Kazan, Russia
Kazan, Tatarstan, Russia
EU

Elena Ursulenko

hematologist
Irkutsk State Regional Children's Clinical Hospital, Irkutsk, Russia
Irkutsk, Irkutsk, Russia
JH

Julia Hammerschmidt

hematologist
Tomsk Regional Clinical Hospital, Tomsk, Russia
Tomsk, Tomsk, Russia
JR

Julia Rozhdestvenskaya

hematologist
Kemerovo City Children’s Cliinical Hospital №7, Kemerovo, Russia
Kemerovo, Kemerovo, Russia
VS

Vera Sibirtseva

hematologist
State Novosibirsk Regional Clinical Hospital, Novosibirsk, Russia
Novosibirsk, Novosibirsk, Russia
EK

Elena Komartseva

hematologist
Rostov Regional Clinical Hospital, Rostov-on-Don, Russia
Rostov, Rostov, Russia
EO

Elena Oganesyan

hematologist
Stavropol Regional Clinical Oncological Dispensary, Stavropol, Russia
Stavropol', Stavropol', Russia
YN

Yulia Nered’ko

hematologist
Regional children clinical Hospital, Stavropol, Russia
Stavropol', Stavropol', Russia
LR

Lubov’ Romanenko

hematologist
Regional children clinical Hospital, Stavropol, Russia
Stavropol', Stavropol', Russia
OL

Olga Leshina

hematologist
Volgograd Regional Clinical Hospital №1, Volgograd, Russia
Volgograd, Volgograd, Russia
OS

Olga Serdyuk

hematologist
Clinical Oncological dispensary №1, Krasnodar, Russia
Krasnodar, Rostov, Russia
KE

Kheda Elgakaeva

hematologist
Republican Children's Clinical Hospital named after E.P. Glinka, Grozny, Russia
Grozniy, Karachay-Cherkess, Russia
ZY

Zimani Yasakova

hematologist
Republican Children's Clinical Hospital named after E.P. Glinka, Grozny, Russia
Grozniy, Karachay-Cherkess, Russia
OY

Olga Yastrubinetskaya

hematologist
National Research Center for Hematology, Moscow, Russia
Moscow, Moskva, Russia

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.