Patient engagement in clinical guidelines development is essential. The results of a self-administered online survey identified themes important to people living with osteoporosis and will inform the development of Osteoporosis Canada clinical guidelines recommendations. INTRODUCTION Patient engagement is essential in the development of high-quality and relevant guidelines for osteoporosis management. Osteoporosis Canada (OC) is updating its national clinical practice guidelines in collaboration with people living with osteoporosis in the process. METHODS Using electronic mail, we contacted 6937 members of the Canadian Osteoporosis Patient Network (COPN) to provide input on the selection of relevant content, outcomes, and research questions via a self-administered online survey. Close-ended questions were analyzed using descriptive statistics, and conventional content analysis was conducted for open-ended questions. RESULTS A total of 1108 individuals completed the survey (97% women, 86% stated they lived with osteoporosis). Most participants considered it critical to have recommendations on physical activity and exercise (74%), fall prevention (69%), nutrition (68%), and initial bone mineral density testing (67%). In addition to preventing fractures, over 75% of respondents stated that consideration of preserving quality of life and ability to perform daily activities, preventing admission to long-term care and fracture-related death, and avoiding serious harms from medications were essential outcomes to consider in evaluating the evidence. In terms of selection of research questions, seven themes emerged from the content analysis including pharmacotherapy, screening and monitoring, diet and supplements, education, exercise, alternative therapies, and pain management. CONCLUSIONS Patients emphasized that autonomy, mobility, and quality of life are highly valued outcomes and must be integral to practice guideline development. As expected, guidance on pharmacotherapy, screening and monitoring, and fracture prevention were priorities identified to be included in osteoporosis management guidelines.

中文翻译：

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患者参与临床指南制定：来自加拿大骨质疏松症患者网络 > 1000 名成员的意见。


患者参与临床指南的制定至关重要。一项自我管理的在线调查的结果确定了对骨质疏松症患者重要的主题，并将为加拿大骨质疏松症临床指南建议的制定提供信息。简介 患者参与对于制定高质量的相关骨质疏松症管理指南至关重要。加拿大骨质疏松症协会 (OC) 正在与骨质疏松症患者合作更新其国家临床实践指南。方法 我们使用电子邮件联系了加拿大骨质疏松症患者网络 (COPN) 的 6937 名成员，通过自我管理的在线调查提供有关相关内容、结果和研究问题的选择的意见。使用描述性统计分析封闭式问题，对开放式问题进行常规内容分析。结果 共有 1108 人完成了调查（97% 为女性，86% 表示她们患有骨质疏松症）。大多数参与者认为提供有关身体活动和锻炼（74%）、跌倒预防（69%）、营养（68%）和初始骨矿物质密度测试（67%）的建议至关重要。除了预防骨折外，超过 75% 的受访者表示，考虑保持生活质量和进行日常活动的能力、防止接受长期护理和骨折相关死亡以及避免药物造成的严重伤害是需要考虑的重要结果在评估证据时。在研究问题的选择方面，内容分析中出现了七个主题，包括药物治疗、筛查和监测、饮食和补充剂、教育、运动、替代疗法和疼痛管理。 结论 患者强调，自主性、活动能力和生活质量是非常有价值的结果，必须成为实践指南制定的组成部分。正如预期的那样，药物治疗、筛查和监测以及骨折预防的指导被确定为骨质疏松症管理指南中的优先事项。