Hemophilia patients’ bone health screening rates low at US HTCs
DEXA scans use X-rays to measure bone density, check for osteoporosis
Despite high rates of bone health issues in hemophilia and von Willebrand disease (VWD), the routine use of DEXA scans remains low across hemophilia treatment centers (HTCs) in the U.S., a study reports.
DEXA, or dual-energy X-ray absorptiometry, is a type of imaging test that uses low-dose X-rays to measure bone density and check for osteoporosis, which is where bones become weaker and more likely to break.
“We show that the rates of screening for osteoporosis were suboptimal, at less than 15% … at specialized HTCs,” the researchers wrote, noting that the rates were calculated based on responses from a fraction of treatment centers, which may “not necessarily reflect practices at all HTCs.”
The study, “Bone Health Screening in Persons With Bleeding Disorders: A Survey of United States Haemophilia Treatment Centres,” was published in Haemophilia.
Hemophilia is caused mainly by mutations in genes that provide instructions to produce specific clotting factors, or proteins needed for the blood to clot, resulting in poor clotting. People with hemophilia commonly have heavy and prolonged bleeding episodes. In severe cases, joint bleeding may occur which may also contribute to poor bone health.
Evaluating rates of bone health screening
Several studies have reported that people with hemophilia have significantly lower bone mineral density than people without the disease. High rates of osteoporosis and bone fractures have also been reported with VWD, another bleeding disorder marked by the lack or dysfunction of von Willebrand factor, a blood clotting protein.
“Despite reports of elevated rates of osteoporosis and fractures in persons with hemophilia … and von Willebrand disease … routine bone health screening using [DEXA] scans is not consistently implemented for this population across all [HTCs] in the United States,” wrote the researchers, who surveyed all federally funded HTCs in the U.S. to determine the rates of bone health screening using vitamin D and DEXA scans in hemophilia and VWD. The survey included nine multiple-choice questions to access current practices used to evaluate bone health. One member from each HTC could complete the survey.
Of the 147 HTCs where the survey was distributed, 66 completed it, yielding a response rate of about 45%. Most respondents were physicians and worked in HTCs that treated both adults and children with bleeding disorders.
Among the responding centers, 21 (31.8%) performed routine screening for vitamin D deficiency during annual visits, while nine (13.6%) performed regular bone health screenings using DEXA scans. DEXA scans were ordered by physicians at a center in 5 of the 9 (55.6%) HTCs where bone health screenings were used. In the remaining four (44.4%), people with bleeding disorders had been referred by primary care providers or specialists for bone health evaluation through DEXA scans.
DEXA scans were more commonly ordered for people with hemophilia, most commonly those with severe forms of hemophilia A and B. Scans were requested less frequently for VWD and milder forms of hemophilia.
The most common indications to perform DEXA scans included HIV infections (77.7%), low physical activity or immobility (66.7%), fractures after a minor fall or injury in patients with bleeding disorders under age 50 (55.5%), and vitamin D deficiency (55.5%).
“In light of the growing burden of an aging population with hemophilia and VWD (and the broad scope of bleeding disorders), future efforts should focus on gaining a deeper understanding of barriers to bone health in [people with hemophilia and VWD] and developing guidelines for bone health assessment, with a specific focus on measuring vitamin D levels and performing DEXA scans,” the researchers wrote.
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