Medialis Ltd, Banbury, UK.
Curr Med Res Opin. 2020 May;36(5):883-893. doi: 10.1080/03007995.2020.1734920. Epub 2020 Mar 11.
Current healthcare professional consensus-generating methodologies work by forcing consensus, which risks corrupting original opinions and often fails to assess prior expert knowledge awareness. Experience gained with a novel method in a progressive life-long rare disease, X-linked hypophosphataemia, which addresses these risks is presented here. Four case-studies are reported, presenting a novel methodology comprised of two survey rounds. Round 1 generated a list of items from healthcare professionals in response to an open-ended research question, alongside systematic literature reviews (when appropriate). These responses were thematically coded into mutually exclusive items then used to develop a structured questionnaire (Round 2), for which each participant identified their level of agreement using Likert scales; all responses were analyzed anonymously. Item awareness, observed agreement, consensus and prompted agreement were objectively measured. The free-text responses to Round 1 tested the awareness of specific items regarding establishing a European registry for X-linked Hypophosphatemia (XLH), limitations of empirical treatment for XLH (adults and paediatrics), and triggers for treatment of XLH in adults. The four cases showed different levels of item awareness, observed consensus and degrees of prompted agreement. All participants agreed or strongly agreed with statements based on the most frequent items listed in Round 1. Less frequent Round 1 items had various degrees of prompted agreement consensus; some did not reach the consensus threshold of >50% participant agreement. Observed proportional group awareness and consensus is quicker than the Delphi technique and its variants, providing objective assessments of expert knowledge and standardized categorization of items regarding awareness, consensus and prompting. Further, it offers tailored management of each item in terms of educational need and further investigation.
目前的医疗保健专业共识生成方法通过强制达成共识来运作，这有风险会歪曲原始意见，并且常常无法评估先前的专家知识意识。本文介绍了一种在一种渐进式的终身性罕见疾病 X 连锁低磷血症中使用新方法获得的经验，该方法解决了这些风险。报告了四个案例研究，提出了一种新的方法，该方法由两轮调查组成。第一轮调查针对一个开放式研究问题，从医疗保健专业人员那里生成了一份项目清单，同时进行了系统的文献回顾（在适当的情况下）。这些回复按照主题进行了分类，分为互斥的项目，然后用于开发结构化问卷（第二轮），每位参与者都使用李克特量表来确定他们的同意程度；所有回复均匿名进行分析。客观地衡量了项目意识、观察到的一致性、共识和提示性同意。第一轮的自由文本回复测试了对建立 X 连锁低磷血症（XLH）欧洲登记处、XLH 经验性治疗的局限性（成人和儿科）以及成人 XLH 治疗的触发因素的具体项目的意识。四个案例显示了不同程度的项目意识、观察到的共识和提示性同意的程度。所有参与者都同意或强烈同意基于第一轮列出的最常见项目的陈述。在第一轮中不太常见的项目具有不同程度的提示性同意共识；有些项目没有达到>50%的参与者同意的共识阈值。观察到的群体意识和共识的比例比 Delphi 技术及其变体更快，它提供了对专家知识的客观评估以及对意识、共识和提示相关项目的标准化分类。此外，它提供了针对每个项目的教育需求和进一步调查的个性化管理。
