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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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Abstract

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.

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Acknowledgements

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.

Funding

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.

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Authors and Affiliations

  1. Rheumatology Department, Hôpital Universitaire Saint Antoine, APHP, Paris, France

    Catherine Beauvais & Mickael Rousière

  2. Rheumatology Department, Centre Hospitalier régional Metz-Thionville, Thionville, France

    Didier Poivret

  3. Rheumatology Department, Centre Hospitalier Régional, Orléans La Source, France

    Eric Lespessailles & Martine Beranger

  4. Rheumatology Department, Centre Hospitalier, Laon, France

    Corinne Thevenot

  5. Rheumatology Department, Centre Hospitalier Victor Dupouy, Argenteuil, France

    Dominique Aubraye & Florence Lévy-Weil

  6. Rheumatology Department, Hôpital Universitaire Pasteur 2, Nice, France

    Liana Euller Ziegler

  7. CIAMS, Universite Paris Sud, Université Paris-Saclay, Orsay Cedex, France

    Edith Filaire

  8. CIAMS, Université d’Orleans, Orleans, France

    Edith Filaire

  9. INRA, UNH, Unite de Nutrition Humaine, CRNH Auvergne, Université Clermont Auvergne, Clermont-Ferrand, France

    Edith Filaire

  10. Centre Hospitalier régional Universitaire de Nancy, INSERM, CIC Epidémiologie clinique, Nancy, France

    Sophie Gendarme & Karine Legrand

  11. Edusanté, Vanves, France

    Yves Magar

  12. Centre Hospitalier Universitaire C.H.U. Lille and Université Lille 2, Rheumatology Department and EA 4490, 59000, Lille, France

    Bernard Cortet

  13. Université de Lorraine, APEMAC, 54000, Nancy, France

    Anne Christine Rat

  14. CHU Caen Rheumatology Department, INSERM, CHRU Nancy, CIC 1433 Epidémiologie clinique, Caen, France

    Anne Christine Rat

Authors
  1. Catherine Beauvais
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  2. Didier Poivret
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  3. Eric Lespessailles
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  4. Corinne Thevenot
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  5. Dominique Aubraye
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  6. Liana Euller Ziegler
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  7. Martine Beranger
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  8. Edith Filaire
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  9. Sophie Gendarme
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  10. Karine Legrand
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  11. Yves Magar
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  13. Florence Lévy-Weil
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  14. Bernard Cortet
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  15. Anne Christine Rat
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Consortia

SOLID’OS Working Group

Contributions

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.

Corresponding author

Correspondence to Catherine Beauvais.

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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.

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The members of the SOLID’OS Working Group are listed in the acknowledgments.

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Beauvais, C., Poivret, D., Lespessailles, E. et al. 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. Calcif Tissue Int 105, 589–608 (2019). https://doi.org/10.1007/s00223-019-00607-z

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