Study of Treatment Burden and Psychosocial Effects in Men with Hemophilia Using Prophylactic Clotting Factor Therapy

What this Trial Is About

Hemophilia is a lifelong bleeding disorder marked by repeated joint bleeding that leads to chronic joint damage and difficulty in movement. This research aims to explore how different prophylactic clotting factor treatments, specifically those with extended half-life EHL and short half-life SHL, affect patients treatment burden and related psychosocial factors like self-efficacy, treatment adherence, sleep quality, and health control beliefs. The study involves patients with hemophilia A or B who are on either EHL or SHL clotting factor concentrates as preventive treatment. Participants must have been on the same treatment type for at least six months. The study collects data at a single screening visit, focusing on patient experiences and perceptions related to treatment burden and psychosocial well-being. During the screening visit, researchers will assess treatment burden using a questionnaire, along with measures of self-efficacy, adherence, sleep quality, and health locus of control. Sociodemographic and clinical information, such as age and frequency of infusions, will also be recorded. This observational study aims to understand how treatment type influences patients daily life and well-being without altering their current care.

Association of Prophylactic Treatment With Treatment Burden and Psychosocial Variables in Patients With Hemophilia