Integrating musculoskeletal ultrasound as a shared decision-making tool in hemophilia care: observations from a 3-year study

Background: Hemophilia significantly impacts joint health, necessitating innovative strategies for early detection and management of joint damage. Objectives: This study assessed the impact of incorporating musculoskeletal ultrasound (MSKUS) into shared decision-making processes on prophylaxis regimens for patients with hemophilia over a 3-year period. Methods: The "Joint Damage Monitoring by Ultrasonography in Patients with Hemophilia in Japan" study was a long-term prospective observational study conducted at Ogikubo Hospital, Tokyo, Japan. It enrolled 174 participants with moderate-to-severe hemophilia A or B. Participants underwent 6 monthly MSKUS evaluations, generating 3582 images from 682 joints; the findings guided adjustments of prophylaxis. Results: Over the 3-year period, 69.3% of participants adjusted their prophylaxis regimen at least once. Adherence, defined as the ratio of the prescribed to the actual frequency of prophylaxis administration as agreed upon by physicians and patients, was high at the beginning of the study, with an average of 91.6%, and remained high after 3 years at 94.7%. The HEAD-US scores for elbows, knees, and ankles significantly improved (all P < .0001). The spontaneous annual joint bleeding rate and Hemophilia Joint Health Scores also significantly improved (P = .001 and P = .004, respectively). Synovitis detection decreased from 12.9% to 1.6%, with the majority of identified synovitis being subclinical (11.7%) and not associated with bleeding events in the 6 months preceding detection. Conclusion: Integrating MSKUS into hemophilia care as a shared decision-making tool significantly facilitates the early detection of joint damage and supports personalized prophylaxis adjustments, markedly improving patient outcomes.