Understanding Patients’ Perspectives and Educational Needs by Type of Osteoporosis in Men and Women and People with Glucocorticosteroid-Induced Osteoporosis: A Qualitative Study to Improve Disease Management
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The aim of the study was to investigate similarities and differences in health beliefs, experiences and educational needs by type of osteoporosis (OP), particularly in people with glucocorticoid-induced OP (GIOP) and men. A qualitative study was conducted via focus groups involving post-menopausal women with or without osteoporotic fractures, osteoporotic men and people with GIOP. Fifty-three participants were included in eight groups. A wide range of health beliefs was found for all types of OP. Osteoporosis was considered a natural consequence of ageing except in men or conversely a serious disease associated with risk of new fractures and disability. GIOP patients had heterogeneous knowledge of OP and reported fewer prevention behaviours, and their quality of life was affected by the causal illness. Men had difficulties coping with the loss of their functional abilities and felt that OP was a “women’s” disease. Beliefs about treatments ranged from confidence to fear of adverse effects or doubt about efficacy in all types of OP. Participants were interested in physical activity, fall prevention and diet, and preferred group sessions. GIOP patients and men had an interest in face-to-face education. Men were also interested in brief information including via the Internet. Patients’ beliefs about OP differed by type of OP. Specific populations such as men or people with GIOP need particular care owing to experiences and needs. Offering group sessions in educational interventions is of interest to allow for sharing experiences and also face-to-face education for men and GIOP patients or the Internet for men.
KeywordsPost-menopausal osteoporosis Glucocorticoid-induced osteoporosis Male Qualitative research
We thank the patients who participated in the study and all members of the SOLID’OS group.
Members of the SOLID’OS group: rheumatologists: C. Beauvais, B. Cortet, L. Euller Ziegler, E. Lespessailles, F. Levy Weil, D.Poivret, AC Rat, M. Rousière, C. Thévenot, P. Grandhaye; Nurses: D. Aubraye, M. Beranger, F. Nominé; patients association: AFLAR: C. Cardon, L. Carton; occupational therapist: N. Dechassat; dietician: A.Hector.
CB and ACR designed the study, analysed the data and prepared the first and final draft of the paper. They are guarantors. Authors DP, EL, CT, LEZ and MB and FL-W participated in the study design and protocol. Authors DP, EL, CT, LEZ, MR, BC and ACR contributed to the experimental work by selecting patients and collecting data. Authors SG, KL, YM performed the interviews and qualitative analysis. BC reviewed the first and final draft of the paper. All authors revised the paper critically for intellectual content and approved the final version. All authors agree to be accountable for the work and to ensure that any questions relating to the accuracy and integrity of the paper are investigated and properly resolved.
This study was funded by the French Society of Rheumatology (SFR). The SFR received an unrestricted institutional grant from Amgen and Lilly for research in the field of osteoporosis and education. Lilly and Amgen were informed that part of the funding would be allocated to this study. Lilly and Amgen did not intervene in the choice of the study’s subject, design, data collection or decision to publish. The grant was used to pay the researchers. All other authors did not receive any honoraria for this study and have no disclosure of interest.
Compliance with Ethical Standards
Conflict of interest
Catherine Beauvais, Didier Poivret, Eric Lespessailles, Yves Magar, Corinne Thevenot, Liana Euller Ziegler, Sophie Gendarme, Karine Legrand, Edith Filaire, Dominique Aubraye, Martine Beranger, Mickael Rousière, Florence Lévy-Weil, Bernard Cortet, Anne Christine Rat declare that they have no conflict of interest.
Human and Animal Rights and Informed Consent
Participants were informed of the study objectives and schedule of the study. Informed consent was obtained from all individual participants included in the study according to local recommendations on research involving human participants.
- 5.Silverman S, Curtis J, Saag K et al (2015) International management of bone health in glucocorticoid-exposed individuals in the observational GLOW study. Osteoporos Int J Establ Result Coop Eur Found Osteoporos Natl Osteoporos Found USA 26:419–420. https://doi.org/10.1007/s00198-014-2883-2 CrossRefGoogle Scholar
- 14.Weaver J, Sajjan S, Lewiecki EM, Harris ST (2017) Diagnosis and treatment of osteoporosis before and after fracture: a side-by-side analysis of commercially insured and medicare advantage osteoporosis patients. J Manag Care Spec Pharm 23:735–744. https://doi.org/10.18553/jmcp.2017.23.7.735 Google Scholar
- 17.Clark EM, Gould VC, Tobias JH, Horne R (2016) Natural history, reasons for, and impact of low/non-adherence to medications for osteoporosis in a cohort of community-dwelling older women already established on medication: a 2-year follow-up study. Osteoporos Int 27:579–590. https://doi.org/10.1007/s00198-015-3271-2 CrossRefGoogle Scholar
- 20.Lau E, Papaioannou A, Dolovich L et al (2008) Patients’ adherence to osteoporosis therapy: exploring the perceptions of postmenopausal women. Can Fam Phys Med Fam Can 54:394–402Google Scholar
- 27.Merle B, Dupraz C, Haesebaert J et al (2018) Osteoporosis prevention: where are the barriers to improvement in a French general population? A qualitative study. Osteoporos Int J Establ Result Coop Eur Found Osteoporos Natl Osteoporos Found USA. https://doi.org/10.1007/s00198-018-4720-5 Google Scholar
- 37.WHO Working Group (2010) Therapeutic patient education continuing education programmes for health care providers in the field of prevention of chronic diseases. Report of a WHO Working Group 1998. http://www.euro.who.int/document/e63674.pdf. Accessed 29 Mar 2010
- 42.Roux C, Wyman A, Hooven FH et al (2012) Burden of non-hip, non-vertebral fractures on quality of life in postmenopausal women: the Global Longitudinal study of Osteoporosis in Women (GLOW). Osteoporos Int J Establ Result Coop Eur Found Osteoporos Natl Osteoporos Found USA 23:2863–2871. https://doi.org/10.1007/s00198-012-1935-8 CrossRefGoogle Scholar