Summary

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患者网络的1000多个成员的意见

概要

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的建议提供参考。

介绍

在制定高质量和相关的骨质疏松症治疗指南时，患者的参与至关重要。加拿大骨质疏松症（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

通过电子邮件，我们与6937个加拿大骨质疏松症患者网络（COPN）的成员进行了联系，以通过自我管理的在线调查提供有关选择相关内容，结果和研究问题的信息。使用描述性统计数据分析封闭式问题，并针对开放式问题进行常规内容分析。

结果

共有1108个人完成了调查（97％的女性，86％的女性表示患有骨质疏松症）。大多数参与者认为就运动和锻炼（74％），预防跌倒（69％），营养（68％）和初始骨矿物质密度测试（67％）提出建议至关重要。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与骨折相关的死亡以及避免药物引起的严重伤害是考虑的基本结果在评估证据时。在选择研究问题方面，内容分析提出了七个主题，包括药物治疗，筛查和监测，饮食和补品，教育，锻炼，替代疗法，

结论

患者强调自治，机动性和生活质量是高度重视的结果，并且必须是实践指南制定的组成部分。如预期的那样，有关药物治疗，筛查和监测以及骨折预防的指南已被确定为要优先纳入骨质疏松症治疗指南中。