STUDY OF QUALITY OF LIFE WITH THE HELP OF IT-TECHNOLOGIES IN PATIENTS WITH HEMOPHILIA

OBJECTIVES: Since 2007, patients with hemophilia enable treatment of blood coagulation factors in the amount of 5IU per capita, in Europe the figure is about 4, (2 to 11IU in different countries). In 2008-2011, we have examined the patients QoL with hemophilia in Russia, Ukraine and Kazakhstan. Availability of Internet allows you to implement this task with the help of software. In 2015, it was developed a program MeDiCase to assess the QoL of remote villages residents with a smart-phone. METHODS: The questionnaire, including an assessment of the quality of life for the EQ-5D with a VAS was posted on the web-site of the Russian Society of hemophiliacs (http://hemophilia2016.tilda.ws.) RESULTS: The web-survey completed by 79 people - about 1.2% of patients receiving therapy with clotting factors on a government program(N=6793): 88%with "A"hemophilia and 12%"B". The average age - 30 years. In large cities live 67%, in small cities 17%, 16%in villages. QoL assessment on the EQ-5D questionnaire revealed that there are no problems with movement in space in 50% of people, small problems -49% extreme problems at 1%. Self-service: no problems -79% of patients with minor problems -17% extreme problems at 4%. Daily Activity: there are no problems in 51% of patients with minor problems -45% extreme problems at 4%. Pain and discomfort there are no problems in 25%, small problems -63% extreme problems 12%. Anxiety and depression: there are no problems in 46%, small problems -43% extreme problems -11%. Respondents rated their quality of life (VAS) as a 63(19tol00). In 2008, the quality of life (VAS) was exactly 60, patients with the presence of antibodies to coagulation factors - 52. CONCLUSIONS: The use of IT-technologies allows patients studies via the Internet, including - with hemophilia, to assess the QoL with the EQ-5D questionnaire.