Paskins Zoe, Jinks Clare, Mahmood Waheed, Jayakumar Prakash, Sangan Caroline B, Belcher John, Gwilym Stephen
Arthritis Research UK Primary Care Centre, Research Institute for Primary Care Sciences, Keele University, Keele, Staffordshire, ST5 5BG, UK.
Haywood Academic Rheumatology Centre, Staffordshire and Stoke-on-Trent Partnership Trust, Stoke-on-Trent, ST6 7AG, UK.
Arch Osteoporos. 2017 Dec;12(1):45. doi: 10.1007/s11657-017-0340-5. Epub 2017 Apr 28.
This is the first national study of public and patient research priorities in osteoporosis and fracture. We have identified new research areas of importance to members of the public, particularly 'access to information from health professionals'. The findings are being incorporated into the research strategy of the National Osteoporosis Society.
This study aimed to prioritise, with patients and public members, research topics for the osteoporosis research agenda.
An e-survey to identify topics for research was co-designed with patient representatives. A link to the e-survey was disseminated to supporters of the UK National Osteoporosis Society (NOS) in a monthly e-newsletter. Responders were asked to indicate their top priority for research across four topics (understanding and preventing osteoporosis, living with osteoporosis, treating osteoporosis and treating fractures) and their top three items within each topic. Descriptive statistics were used to describe demographics and item ranking. A latent class analysis was applied to identify a substantive number of clusters with different combinations of binary responses.
One thousand one hundred eighty-eight (7.4%) respondents completed the e-survey. The top three items overall were 'Having easy access to advice and information from health professionals' (63.8%), 'Understanding further the safety and benefit of osteoporosis drug treatments' (49.9%) and 'Identifying the condition early by screening' (49.2%). Latent class analysis revealed distinct clusters of responses within each topic including primary care management and self-management. Those without a history of prior fracture or aged under 70 were more likely to rate items within the cluster of self-management as important (21.0 vs 12.9 and 19.8 vs 13.3%, respectively).
This is the first study of public research priorities in osteoporosis and has identified new research areas of importance to members of the public including access to information. The findings are being incorporated into the research strategy of the National Osteoporosis Society.
这是第一项关于骨质疏松症和骨折的公众及患者研究重点的全国性研究。我们确定了对公众成员而言重要的新研究领域,尤其是“从医疗专业人员处获取信息”。研究结果正被纳入国家骨质疏松协会的研究战略。
本研究旨在与患者及公众成员共同确定骨质疏松症研究议程的研究主题优先级。
与患者代表共同设计了一项电子调查问卷以确定研究主题。该电子调查问卷的链接通过每月电子通讯发送给英国国家骨质疏松协会(NOS)的支持者。要求受访者指出他们在四个主题(了解和预防骨质疏松症、患骨质疏松症后的生活、治疗骨质疏松症以及治疗骨折)中研究的首要重点,以及每个主题下的前三项。使用描述性统计来描述人口统计学特征和项目排名。应用潜在类别分析来识别具有不同二元反应组合的大量集群。
1188名(7.4%)受访者完成了电子调查。总体上前三项是“能够轻松从医疗专业人员处获得建议和信息”(63.8%)、“进一步了解骨质疏松症药物治疗的安全性和益处”(49.9%)以及“通过筛查早期发现病情”(49.2%)。潜在类别分析揭示了每个主题内不同的反应集群,包括初级保健管理和自我管理。没有既往骨折史或年龄在70岁以下的人更有可能将自我管理集群中的项目评为重要(分别为21.0%对12.9%以及19.8%对13.3%)。
这是第一项关于骨质疏松症公众研究重点的研究,并确定了对公众成员而言重要的新研究领域,包括获取信息。研究结果正被纳入国家骨质疏松协会 的研究战略。