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

Abstract

Summary

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.