Adverse events; Fracture; Osteoporosis treatment; Quality of life; Treatment adherence; Bone Density Conservation Agents; Humans; Pilot Projects; Middle Aged; Male; Female; Aged; Qualitative Research; Surveys and Questionnaires; Bone Density Conservation Agents/therapeutic use; Osteoporotic Fractures/prevention & control; Osteoporosis/psychology; Osteoporosis/therapy; Osteoporosis/drug therapy; Health Knowledge, Attitudes, Practice; France; Osteoporosis; Osteoporotic Fractures; Orthopedics and Sports Medicine
Abstract :
[en] [en] UNLABELLED: 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.
Disciplines :
Public health, health care sciences & services
Author, co-author :
Javier, R M ; Rheumatology University Hospital Strasbourg, GRIO Groupe de Recherche Et d'Information Sur Les Ostéoporoses, Strasbourg, France
Debiais, F; Department of Rheumatology, University-Hospital of Poitiers, Poitiers, France
Alliot-Launois, F; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Poivret, D; CHU Metz Mercy, AFLAR, Metz, France
Bosgiraud, P; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Barbe, F; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Bouyssié, M; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Devert, M; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Roux, F; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Sacchi, M P; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Sirot, S; AFLAR Association Française de Lutte Anti-Rhumatismale, Paris, France
Halbout, P; IOF International Osteoporosis Foundation, Nyon, Switzerland
Chevalley, T ; IOF International Osteoporosis Foundation, Nyon, Switzerland. thierry.chevalley@unige.ch ; Division of Bone Diseases, Department of Medicine, Geneva University Hospitals and Faculty of Medicine, University of Geneva, Geneva, Switzerland. thierry.chevalley@unige.ch
Reginster, Jean-Yves ; Université de Liège - ULiège > Département des sciences de la santé publique ; IOF International Osteoporosis Foundation, Nyon, Switzerland ; Biochemistry Department, College of Science, King Saud University, Riyadh, Kingdom of Saudi Arabia
Cortet, B ; Department of Rheumatology and ULR 4490 (MabLab), University-Hospital of Lille, Lille, France
Open access funding provided by University of GenevaThe authors thank all the patients who have participated to the study for allowing us to report their opinion. The authors are grateful to the International Osteoporosis Foundation for the funding and the support.
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