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. 2025 Sep 8.
doi: 10.1007/s00198-025-07684-x. Online ahead of print.

Latin American patients' perceptions on osteoporosis diagnosis and treatment: The IOF Patient Advisory Group in Latin America

P Clark  1   2 , M Caló  3 , S T Bostico  4 , A Orcesi de Pedro  5 , G Altamar  6 , M L Morato Hernández  7 , J E Levin Ford  8 , M P Cornejo Ortega  9 , C Firpo  4 , M V Barrachina  2 , J Y Reginster  10   11
Affiliations

Latin American patients' perceptions on osteoporosis diagnosis and treatment: The IOF Patient Advisory Group in Latin America

P Clark et al. Osteoporos Int. .

Abstract

The study explored osteoporosis patients' views on the disease in six LATAM countries. All were diagnosed for over 3 years, 65% avoiding fragility fractures. Sixteen used osteoporosis drugs, trusting physicians most. Though osteoporosis has moderately impacted their quality of life, all fear a future of falls and loss of independence.

Purpose: The aim of this study was to understand osteoporosis patients' perceptions, behaviors, and expectations in relation to diagnosis and treatment.

Methods: A convenience sample of 20 patients from six different LATAM countries constituted a focal group. All participants were diagnosed with osteoporosis and in treatment at various stages of the disease. The study was conducted in two phases: the first one involved a cross-sectional survey using an instrument developed by the IOF which was tailored to local needs, and the second consisted of a focus group in a hybrid format.

Results: The twenty participants were diagnosed with osteoporosis for less than 3 years, most of them received treatment and did not fracture. Treating physicians was the most trusted source of information, while influencers and media were seen as unreliable. Osteoporosis had a moderate impact on patients' quality of life, with only a few requiring help with daily chores. The qualitative phase revealed that patients who received care at private institutions had better access to information about the disease and treatment options. Despite the minimal impact on their current quality of life, patients showed concern about future risks like falls and loss of independence.

Conclusion: Being diagnosed with osteoporosis has a significant impact on people's daily life, independently whether a fracture occurred, received treatment, embraced a healthy bone lifestyle or trust own treating physician. Fear of fractures and their consequences underly patients' perceptions which is seen as not considered enough by physicians, health authorities, drug companies, NGOs and media.

Keywords: Behaviors; Osteoporosis knowledge; Patient centricity; Patient journey; Treatment perception.

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Conflict of interest statement

Declarations. Conflict of interest: Patricia Clark, Monica Caló, Silvana T. Bostico, Adriana Orcesi de Pedro, Geraldine Altamar, María Lourdes Morato Hernández, Joan Emma Levin Ford, Mijahil Pavel Cornejo Ortega, Claudia Firpo and María Victoria Barrachina declare that they have no conflict of interest. Jean-Yves Reginster declares that this work was supported by the Distinguished Scientist Fellowship Program (DSFP) of the King Saud University, Riyadh, Kingdom of Saudi Arabia.

References

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