Department of Value-Based Healthcare, St. Antonius Hospital, Nieuwegein, The Netherlands.
Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Radboud University Medical Center, Nijmegen, The Netherlands.
BMJ Open Respir Res. 2019 Feb 18;6(1):e000394. doi: 10.1136/bmjresp-2018-000394. eCollection 2019.
Routine and international comparison of clinical outcomes enabling identification of best practices for patients with pulmonary sarcoidosis is lacking. The aim of this study was to develop a standard set of outcome measures for pulmonary sarcoidosis, using the value-based healthcare principles.
Six expert clinics for interstitial lung diseases in four countries participated in a consensus-driven RAND-modified Delphi study. A mixed-method approach was applied for the identification of an outcome measures set and initial conditions for patients with pulmonary sarcoidosis. The expert team consisted of multidisciplinary professionals (n=14) from Cleveland Clinic, Cincinnati MC, Erasmus MC, Leuven UZ, Royal Brompton and St. Antonius Hospital. During a ranking process, participants were instructed to rank variables on a scale from 1 to 10 based on whether it has (1) impact of the outcome on quality of life, (2) impact of quality of care on the outcome and (3) the number of patients negatively affected by the outcome.
An outcome measures set was defined consisting of seven outcome measures: mortality, pulmonary function, soluble interleukin-2 receptor change as an activity biomarker, weight gain, quality of life, osteoporosis and clinical outcome status.
Collecting outcomes in pulmonary sarcoidosis internationally and the use of a broadly accepted set can enable international comparison. Differences in outcomes can potentially be used as a starting point for quality improvement initiatives.
缺乏对肺结节病患者的常规临床结果进行国际比较和识别最佳实践的方法。本研究的目的是使用基于价值的医疗保健原则，为肺结节病制定一套标准的结果衡量标准。
来自四个国家的六个间质性肺疾病专家诊所参与了一项共识驱动的 RAND 改良 Delphi 研究。采用混合方法确定了一套结果衡量标准，并为肺结节病患者确定了初始条件。专家团队由克利夫兰诊所、辛辛那提医学中心、伊拉斯谟医学中心、鲁汶大学UZ、皇家布朗普顿和圣安东尼医院的多学科专业人员（n=14）组成。在排名过程中，参与者被要求根据以下三个标准对变量进行 1 到 10 的评分：（1）结果对生活质量的影响，（2）护理质量对结果的影响，以及（3）受结果负面影响的患者数量。
确定了一个由七个结果衡量标准组成的结果衡量标准集：死亡率、肺功能、可溶性白细胞介素-2 受体变化作为活性生物标志物、体重增加、生活质量、骨质疏松症和临床结果状况。
在肺结节病中进行国际范围的结果收集和使用广泛接受的标准集可以实现国际比较。结果的差异可能被用作质量改进计划的起点。
