Clark P, Caló M, Bostico S T, de Pedro A Orcesi, Altamar G, Hernández M L Morato, Ford J E Levin, Ortega M P Cornejo, Firpo C, Barrachina M V, Reginster J Y
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.
Osteoporos Int. 2025 Sep 8. doi: 10.1007/s00198-025-07684-x.
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.
The aim of this study was to understand osteoporosis patients' perceptions, behaviors, and expectations in relation to diagnosis and treatment.
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.
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.
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.
该研究探讨了拉丁美洲六个国家骨质疏松症患者对该疾病的看法。所有患者均已确诊超过3年，65%的患者避免了脆性骨折。16名患者使用骨质疏松症药物，最信任医生。尽管骨质疏松症对他们的生活质量有一定影响，但所有人都担心未来会跌倒并失去独立生活能力。
本研究的目的是了解骨质疏松症患者在诊断和治疗方面的认知、行为和期望。
从拉丁美洲六个不同国家选取20名患者组成一个焦点小组作为便利样本。所有参与者均被诊断患有骨质疏松症且处于疾病的不同治疗阶段。该研究分两个阶段进行：第一阶段采用国际骨质疏松基金会开发并根据当地需求定制的工具进行横断面调查，第二阶段采用混合形式的焦点小组。
20名参与者被诊断患有骨质疏松症不到3年，大多数人接受了治疗且未发生骨折。治疗医生是最值得信赖的信息来源，而有影响力的人和媒体则被视为不可靠。骨质疏松症对患者的生活质量有一定影响，只有少数人在日常生活中需要帮助。定性阶段表明，在私立机构接受治疗的患者能更好地获取有关疾病和治疗选择的信息。尽管对他们目前的生活质量影响最小，但患者对未来跌倒和失去独立生活能力等风险表示担忧。
被诊断患有骨质疏松症对人们的日常生活有重大影响，无论是否发生骨折、接受治疗、采取健康的骨骼生活方式或信任自己的治疗医生。对骨折及其后果的恐惧是患者认知的基础，而医生、卫生当局、制药公司、非政府组织和媒体对此的重视程度似乎不够。
