A Cochrane review of small trials in people with hemophilia found exercise groups saw greater improvements in pain, muscle strength, and joint range of motion than control groups, though none of the included studies reported bleed frequency as an outcome.\u00b9<\/p>\n
Hemophilia A Treatment Goals From Childhood to Adulthood<\/p>\n
Quon described priorities shifting across a patient\u2019s life. In childhood, the focus is developing healthy joints. In adolescence, care centers on maintaining joint health while helping patients become more independent with their treatment and learn to choose appropriate activities.<\/p>\n
By adulthood, she sees the goal as patients doing what they want without limits from their condition. Travel has become a major priority for many adults, and Quon noted patients no longer need to bring suitcases full of factor. Patients have told her caring for a family has also become easier.<\/p>\n
\u201cYour treatment is not such a burden anymore,\u201d Quon said.<\/p>\n
Subclinical Bleeding and Chronic Pain Remain an Unmet Need<\/p>\n
In Quon\u2019s view, the unmet need in hemophilia A care has shifted. Breakthrough bleeds once dominated, but she now sees less of those and more difficulty identifying subclinical bleeding and distinguishing a bleed from chronic pain.<\/p>\n
That challenge is sharpest in older patients with acute pain layered on top of chronic arthropathy pain. Researchers have noted physical examination and patient self-assessment may not accurately identify a joint bleed, and teams are developing artificial intelligence tools paired with point-of-care ultrasound to support detection at the bedside and at home.\u00b2<\/p>\n
Quon expects the next generation to face this problem less often.<\/p>\n
\u201cEven zero bleeds doesn\u2019t always mean healthy joints,\u201d Quon said. \u201cAs kids grow up with no bleeding, they\u2019ll have healthier joints and have much better function, and I think that means a lot.\u201d<\/p>\n
Editors\u2019 Note: Disclosures for Quon include Bayer, BioMarin, and Sanofi.<\/p>\n