Behaviors; Osteoporosis knowledge; Patient centricity; Patient journey; Treatment perception; Bone Density Conservation Agents; Humans; Female; Middle Aged; Cross-Sectional Studies; Male; Aged; Bone Density Conservation Agents/therapeutic use; Osteoporotic Fractures/prevention & control; Osteoporotic Fractures/psychology; Quality of Life; Focus Groups; Aged, 80 and over; Latin America; Adult; Physician-Patient Relations; Osteoporosis/diagnosis; Osteoporosis/psychology; Osteoporosis/drug therapy; Osteoporosis/therapy; Health Knowledge, Attitudes, Practice; Attitude to Health; Osteoporosis; Osteoporotic Fractures; Endocrinology, Diabetes and Metabolism
Abstract :
[en] [en] UNLABELLED: 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.
Disciplines :
Public health, health care sciences & services
Author, co-author :
Clark, P ; Clinical Epidemiology Unit. Universidad Autónoma de Mexico (UNAM) Faculty of Medicine and Hospital Infantil Federico Gómez, CDMX, Mexico City, Mexico ; Osteoporosis Foundation IOF Regional Office, CDMX, Mexico City, Mexico
Caló, M ; Osteoporosis Foundation IOF Regional Office, CDMX, Mexico City, Mexico. monica.calo@osteoporosis.foundation
Bostico, S T; Sanatorio Las Lomas - CEM (Centro de Endocrinología, Nutrición y Diabetes), San Isidro, BA, Argentina
de Pedro, A Orcesi; Federação Brasileira de Associações de Ginecologia e Obstetrícia (FEBRASGO), Universidade Estadual de Campina, São Paulo, Brazil
Altamar, G; Asociación Colombiana de Osteoporosis y Metabolismo Mineral (ACOMM), Universidad del Valle, Bogotá, Colombia
Hernández, M L Morato; American British Cowdray Enocrinology, Asociación Mexicana de Metabolismo Óseo y Mineral (AMMOM), CDMX, Mexico City, Mexico
Ford, J E Levin; Fundación de Osteoporosis y Enfermedades Metabólicas Óseas (FOSEMO), Ciudad de Panamá, Panamá
Ortega, M P Cornejo ; Jefe del Servicio de Inmunoreumatología del Hospital Nacional Arzobispo Loayza, Sociedad Peruana de Reumatología, Lima, Perú
Firpo, C; Sanatorio Las Lomas - CEM (Centro de Endocrinología, Nutrición y Diabetes), San Isidro, BA, Argentina
Barrachina, M V; Osteoporosis Foundation IOF Regional Office, CDMX, Mexico City, Mexico
Reginster, Jean-Yves ; Université de Liège - ULiège > Département des sciences de la santé publique ; International Osteoporosis Foundation, Nyon, Switzerland ; Protein Research Chair, Biochemistry Department, College of Science, King Saud University, Riyadh, Kingdom of Saudi Arabia
Language :
English
Title :
Latin American patients' perceptions on osteoporosis diagnosis and treatment: The IOF Patient Advisory Group in Latin America.
Publication date :
November 2025
Journal title :
Osteoporosis International
ISSN :
0937-941X
eISSN :
1433-2965
Publisher :
Springer Science and Business Media Deutschland GmbH, England
The authors thank all the patients who have participated in the study for allowing us to report their opinion. The authors are grateful to the International Osteoporosis Foundation for the funding and support.Patricia Clark, Monica Cal\u00F3, Silvana T. Bostico, Adriana Orcesi de Pedro, Geraldine Altamar, Mar\u00EDa Lourdes Morato Hern\u00E1ndez, Joan Emma Levin Ford, Mijahil Pavel Cornejo Ortega, Claudia Firpo and Mar\u00EDa 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.
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