Latin American patients’ perceptions on osteoporosis diagnosis and treatment: The IOF Patient Advisory Group in Latin America
摘要
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.
PurposeThe aim of this study was to understand osteoporosis patients’ perceptions, behaviors, and expectations in relation to diagnosis and treatment.
MethodsA 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.
ResultsThe 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.
ConclusionBeing 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.