Bone Health Screening in Persons With Bleeding Disorders: A Survey of United States Haemophilia Treatment Centres

Despite reports of elevated rates of osteoporosis and fractures in persons with haemophilia (PwH) and von Willebrand disease (PwVWD), routine bone health screening using dual-energy X-ray absorptiometry (DEXA) scans is not consistently implemented for this population across all Haemophilia Treatment Centres (HTCs) in the United States.

The primary aim of this study was to examine rates of screening for bone health in PwH and PwVWD with vitamin D levels and DEXA scans.

We conducted a survey of all federally funded HTCs nationwide from June 2023 to August 2023. Nine multiple-choice questions were developed to explore the roles of HTC providers and their current practices for bone health assessment.

The survey achieved a response rate of 44.8% (66 out of 147 HTCs). Among the responding centres, 21 HTCs (31.8%) reported routinely screening for vitamin D deficiency during annual comprehensive visits, while 13.6% (n = 9) performed regular bone health screenings using DEXA scans. Of these nine centres, three were adult HTCs and six were lifespan HTCs. DEXA scans were ordered either by physicians at the HTC (n = 5, 55.5%) or patients were referred to primary care providers, endocrinologists, or other specialists (n = 4, 44.4%). The top three indications for DEXA scans among the responding HTCs included HIV (n = 7, 77.7%), low physical activity or immobility (n = 6, 66.7%), fractures after a minor fall or injury in patients under 50 years of age (n = 5, 55.5%) and vitamin D deficiency (n = 5, 55.5%). These findings underscore the need for specific standardized screening guidelines to optimize bone health screening in PwH and PwVWD.