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. 2025 Jan 15;20(1):9.
doi: 10.1007/s11657-024-01486-0.

Patient perceptions of osteoporosis management: a qualitative pilot study by a patient advisory group

R M Javier  1 , F Debiais  2 , F Alliot-Launois  3 , D Poivret  4 , P Bosgiraud  3 , F Barbe  3 , M Bouyssié  3 , M Devert  3 , F Roux  3 , M P Sacchi  3 , S Sirot  3 , P Halbout  5 , T Chevalley  6   7 , J Y Reginster  5   8 , B Cortet  9
Affiliations

Patient perceptions of osteoporosis management: a qualitative pilot study by a patient advisory group

R M Javier et al. Arch Osteoporos. .

Abstract

The management of osteoporosis even after a fracture is declining. Our pilot study in patients with osteoporosis confirms a large ignorance of the disease and major fears and uncertainties about the treatments. Complete and sustained medical information seems essential to counteract the contradictory information, which are exclusively negative.

Purpose: The management of osteoporosis (OP) even after a fracture has declined over recent years despite the actions of the medical societies concerned with this disease. The objective of this pilot study was to investigate patients' perceptions of OP, their treatment pathways, and how information is obtained.

Methods: The Association Française de Lutte Anti-Rhumatismale (AFLAR) constituted an advisory group of 7 French patients (mean age 63.7 years [54-74 years]), with various stages of OP and duration of disease. A qualitative, anonymized study was conducted with an open-ended semi-structured questionnaire, with a contribution of the International Osteoporosis Foundation (IOF) and the "Groupe de Recherche et Informations sur les Ostéoporoses" (GRIO).

Results: The onset of OP was often sudden, with the fracture occurring in a context of deep misunderstanding of OP by both the public and physicians. The patients have confidence in the physician, mostly a rheumatologist, who informs about OP and initiates the treatment. The main cause of non-adherence being major fears and uncertainties about efficacy and safety of treatments. Medical information is considered as insufficient, or poorly understood. Negative information has the highest impact, even if the sources seem unreliable, such as media. There is no trust in pharmaceutical companies and the ethics of physicians are in question.

Conclusion: This IOF/GRIO/AFLAR Patient Advisory Group pilot study illustrates the numerous barriers to effective OP management. Complete and sustained medical information, especially at the time of diagnosis and initiation of treatment, seems essential to counteract the contradictory information, which are exclusively negative.

Keywords: Adverse events; Fracture; Osteoporosis treatment; Quality of life; Treatment adherence.

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Conflict of interest statement

Declarations. Ethics approval: All procedures were performed in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Consent to participate: Informed consent was obtained from all individual participants included in the study. Conflict of interest: FB has received honoraria/funding from Alexion, Amgen, Besins, Galapagos, Kyowa Kirin, Lilly, Novartis, Pfizer, Roche, Teva, Theramex, UCB. BC has received honoraria/funding from Alexion, Amgen, Besins, Kyowa Kirin, Novartis, Theramex, UCB, Viatris, and Alexion. He has served as an expert in advisory board meetings for UCB. RMJ, FAL, DP, PB, FB, MB, MD, FR, MPS, SS, PH, TC, and JYR have no conflict of interest.

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References

    1. Cortet B, Chauvin P, Feron JM et al (2020) Fragility fractures in France: epidemiology, characteristics and quality of life (the EPIFRACT study). Arch Osteoporos 15:46 - PubMed
    1. Briot K, Grange L, Cortet B et al (2020) Real-world care for individuals aged over fifty with fractures in France: evidence for a wide care gap-The EPIFRACT Study. Joint Bone Spine 87:467–473 - PubMed
    1. Roux C, Thomas T, Paccou J et al (2021) Refracture and mortality following hospitalization for severe osteoporotic fractures: the Fractos Study. JBMR Plus 5:e10507 - PMC - PubMed
    1. Arnold M, Rutherford MJ, Bardot A et al (2019) Progress in cancer survival, mortality, and incidence in seven high-income countries 1995–2014 (ICBP SURVMARK-2): a population-based study. Lancet Oncol 20:1493–1505 - PMC - PubMed
    1. Kanis JA, Norton N, Harvey NC et al (2021) SCOPE 2021: a new scorecard for osteoporosis in Europe. Arch Osteoporos 16:82 - PMC - PubMed

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