Research project whose main objective is to evaluate the use of a technology platform (uPatient) to register the prophylactic treatment of patients with hemophilia treated in different Hematology and Hemotherapy services of several hospitals in Spain.
The data obtained in this project will identify the level of compliance to the pharmacological treatment of patients with hemophilia prophylaxis. They will use different psychosocial questionnaires based on scientific evidence and the reliability of these, as well as its specific design for patients with hemophilia. Clinical data were also obtained regarding the joint of patients participating in the study state.
Study Type
OBSERVATIONAL
Enrollment
40
Using the platform Upatient, patients with hemophilia will register for one year, the prophylactic treatment who receive at home. Likewise, they indicate a replacement therapy as a result of joint bleeds. At baseline, a month, 6 months and at the end of the study, patients shall complete two questionnaires. The same way in the initial evaluation and end of the study, the clinical joint status will be evaluated with HJHS scale .
Registration of the uPatient platform
This register indicates the number of infusions
Time frame: Screening visit
Change from baseline the quality of life at 6 months and at the end of the study
Quality of life questionnaire (SF-36)
Time frame: Screening visit, up to 4 weeks, up to 24 weeks and through study completion, an average of 1 year
Change from baseline the perception of disease at 6 months and at the end of the study
Questionnaire to evaluate the perception of disease (Questionnaire IPQ-R)
Time frame: Screening visit, up to 4 weeks, up to 24 weeks and through study completion, an average of 1 year
Change from baseline the compliance to the prophylactic treatment at 6 months and at the end of the study
Spanish version of the questionnaire for compliance to prophylactic treatment in patients with haemophilia (Veritas-Pro).
Time frame: Screening visit, up to 4 weeks, up to 24 weeks and through study completion, an average of 1 year
Change from baseline the joint status at the end of the study
Spanish version of the Haemophilia Joint Health Score (HJHS), to assess the joint status in patients with hemophilia
Time frame: Screening visit and through study completion, an average of 1 year
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