Pilot study highlights critical gaps in patients’ osteoporosis awareness and management

Although osteoporosis and related fractures impose a significant and growing burden, the management of this disease, even following fractures, is on the decline. A new groundbreaking pilot study carried out in France, sheds light on the numerous barriers to effective management of patients with osteoporosis. It identifies profound knowledge gaps and misinformation surrounding osteoporosis, as well as fears and uncertainties regarding its treatments.

The study was conducted by the International Osteoporosis Foundation (IOF) in partnership with the Groupe de Recherche et d’Information sur les Ostéoporoses (GRIO) and with a patient advisory group established by the Association Française de Lutte Anti-Rhumatismale (AFLAR). Its aim was to examine patient perceptions of osteoporosis, their treatment experiences, and the sources of their information.

Key Findings:

• Widespread misunderstanding: Many patients were unaware of the link between osteoporosis and fractures, often failing to recognize the severity of the disease.
• Mistrust of information sources: Patients expressed distrust toward pharmaceutical companies and scepticism about treatment safety and efficacy, often influenced by unreliable media sources.
• Critical role of healthcare providers: Confidence in physicians, particularly rheumatologists, remains strong. However, the study found that the information provided during consultations is often insufficient or poorly understood.
• Impact of negative messaging: Negative and contradictory information, especially from lay media and non-medical sources, had a profound influence on patients’ willingness to pursue treatment.
• Low persistence and adherence: The challenges and barriers outlined in the above-listed findings play a role in the poor adherence to treatment.

Professor Bernard Cortet, senior author and past-president of GRIO, stated:

“Osteoporotic fractures affect an estimated 340,000 community-based individuals aged 50 and older in France each year. Yet, only 16.7% of patients receive appropriate treatment within a year of a fracture. Although the mortality rate within a year after a fracture is strikingly high, many patients remain unaware that it can rival the mortality risk of a heart attack or breast cancer. Sadly, misunderstandings and concerns about treatment often prevent them from seeking potentially life-changing therapies, and are a major reason for the low persistence and adherence to therapy even after prescription.”

Recommendations for Change:

The study underscores the need for sustained, clear, and accessible medical information, with key recommendations including:

• Comprehensive and transparent education: Patients must receive detailed explanations about osteoporosis, the role of treatments in preventing fractures, and the risks of inaction. Open discussions about treatment options, side effects, and personalized benefits, especially at the time of diagnosis and initiation of treatment, are of paramount importance to address concerns and improve adherence. The concept of the benefit/risk ratio of treatments must be explained, emphasizing that the benefits are significant.
• Combating misinformation: Reliable, evidence-based resources should be made widely available to counteract the impact of unverified and negative media claims.
• Supporting healthcare providers: General practitioners and specialists would benefit from tools and training to effectively communicate the urgency and benefits of osteoporosis management. Fracture Liaison Services can play a valuable role in enhancing understanding of the importance of preventing secondary fractures.

Dr Philippe Halbout, CEO of the IOF and co-author, concluded:

“This study serves as a clarion call for healthcare systems, policymakers, and patient advocacy groups to prioritize education and trust-building in osteoporosis care. By addressing barriers to treatment and fostering shared decision-making, we can empower patients with osteoporosis to take proactive steps toward a fracture-free and independent future.”

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Reference:

Javier, R. M., Debiais, F., Alliot-Launois, F., Poivret, D., Bosgiraud, P., Barbe, F., Bouyssié, M., Devert, M., Roux, F., Sacchi, M. P., Sirot, S., Halbout, P., Chevalley, T., Reginster, J. Y., & Cortet, B. Patient perceptions of osteoporosis management: a qualitative pilot study by a patient advisory group. Arch Osteoporos 20, 9 (2025). https://doi.org/10.1007/s11657-024-01486-0

About IOF

The International Osteoporosis Foundation (IOF) is the world's largest nongovernmental organization dedicated to the prevention, diagnosis and treatment of osteoporosis and related musculoskeletal diseases. IOF’s network includes membership committees comprised of scientific experts, 340 patient, medical societies and universities in more than 100 countries, as well as over 1100 Fracture Liaison Services in all regions of the world. The IOF network is united in its mission to prioritize bone health and fracture prevention, striving toward a shared vision of a world free from fragility fractures, where healthy mobility is a reality for all. @iofbonehealth

Websites: www.osteoporosis.foundation ; www.capturethefracture.org ; www.worldosteoporosisday.org ; www.buildbetterbones.org