The topic of bone health in people with bleeding disorders has received more attention and study in recent years, with reports suggesting that people with hemophilia (PwH) and people with von Willebrand disease (PwVWD) experience higher rates of osteoporosis and bone fractures. That said, screening for bone health is not consistent across federally funded hemophilia treatment centers. A lack of clear, uniform screening guidelines is a major contributing factor to this disparity.
A new paper published in the journal Haemophilia looked to shed light on current practices of HTCs for assessing bone health. The authors created a survey focused on HTC’s utilization of two common methods for assessment: bone density scanning through Dual-energy X-ray Absorptiometry (DEXA) and blood serum tests of vitamin D levels.
The electronic survey was disseminated to all federally funded HTCs in the U.S. from June 2023 to August 2023. It included nine multiple choice questions relevant to the demographics of HTC participants, overall HTC profiles, plus current practices for DEXA scanning and measurements of vitamin D levels. A total of 147 HTCs received the survey, with 66 responding.
Only nine of the 66 (13.6%) indicated that they use DEXA scans to assess bone health. Of these three were adult HTCs and six were “lifespan” HTCs; meaning they serve both pediatric and adult patients. DEXA scans were ordered by HTC physicians in five of the centers (55.5%), while at the other four (44.4%), patients were referred to primary care doctors, endocrinologists or other specialists for bone health evaluation and performance of DEXA scans. In terms of types of patients scanned, the majority were individuals with hemophilia A or B. Four HTCs performed screening exclusively in males, while five HTCs conducted screening in both males and females.
Among the 66 centres, 21 HTCs (31.9%) indicated that they routinely conducted screening for vitamin D deficiency during comprehensive visits, while the remaining 45 (68.1%) did not conduct any vitamin D deficiency screening. Of the 21 centers that screened for vitamin D deficiency, there were seven were exclusively pediatric centres, three wereadult centers and 11 lifespan centers. Lastly, only five HTCs – all lifespan centers, conducted both DEXA scans and vitamin D deficiency screening.
It should be noted that a foremost limitation on this study was the modest overall response rate of 44.8% representing less than half of federally funded HTCs in the U.S. Therefore, the authors caution against drawing sweeping conclusions, emphasizing that the data does not necessarily reflect the practices of all or even the majority of HTCs.
The authors also offer some explanations for why bone health assessments are not more widely recommended at HTCs.
“While this finding was rather surprising, there are several reasons why providers are not recommending bone health assessment. First, there is a lack of consistency in expert recommendations regarding bone health assessment,” explained the authors. “The World Federation of Hemophilia (WFH) guidelines recommend that screening may be appropriate for those with haemophilia who are at high risk or have multiple clinical risk factors for osteoporosis but acknowledge the uncertainty whether routine osteoporosis screening is necessary for all individuals with haemophilia or not. Furthermore, the criteria for ‘high risk’ are not clearly elaborated.”
The paper goes on to lay out examples of the somewhat disparate guidelines for bone health assessment amongst various international health organizations. In addition, guidance from U.S. based entities such as The United States Preventive Services Task Force and the National Osteoporosis (NOF) include clear recommendations for health screening in women 65 years or older, and potentially younger women as well depending on other risk factors. However, there seems to be a lack of consensus relevant to screening in other subgroups such as for osteoporosis in men. And while a multispecialty council of bone health experts convened by the NOF has identified hemophilia as a condition that can be linked to increased risk for osteoporosis, von Willebrand disease was not mentioned.
The authors suggest several ways that bone health assessments could be enhanced including the integration of standardized osteoporosis screening guidelines into national hemophilia care protocols. Accredited healthcare provider education and resources to support clinical decisions may also improve awareness and lead to enhanced screening practices. Better interdisciplinary collaboration between HTC providers, primary care physicians, and endocrinologists could also foster more prompt assessments of bone health.
In addition, patient advocacy organizations could complement these efforts by fostering awareness, monitoring bone health outcomes, and promoting/supporting screening initiatives. Lastly, significant barriers associated with insurance and reimbursement would also need to be addressed if broad enhancements in bone health screening may be achieved.
“In summary, our study identified a clinical care gap in the evaluation of bone health in PwH and PwVWD at HTCs across the United States. Considering the growing burden of an aging population with haemophilia and VWD (and the broad scope of bleeding disorders), future efforts should focus on gaining a deeper understanding of barriers to bone health in PwH and PwVWD and developing guidelines for bone health assessment, with a specific focus on measuring vitamin D levels and performing DEXA scans,” concluded the authors.
Citation
Citla-Sridhar D, Ahuja S, Sidonio R, Chitlur M, Sharathkumar A, Tobase P, Acharya S, Isaac D, Kulkarni R, Johnson MM. Bone Health Screening in Persons with Bleeding Disorders: A Survey of United States Haemophilia Treatment Centres. Haemophilia. 2025 Mar 7. doi: 10.1111/hae.70027. Epub ahead of print. PMID: 40052405.
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