Thunold Rikke Flor, Løkke Anders, Cohen Adam Langballe, Ole Hilberg, Bendstrup Elisabeth
Department of Internal Medicine Orkdale, St. Olavs University Hospital, Trondheim, Norway.
Department of Respiratory Diseases and Allergology, Aarhus University Hospital, Aarhus, Denmark.
Sarcoidosis Vasc Diffuse Lung Dis. 2017;34(1):2-17. doi: 10.36141/svdld.v34i1.5760. Epub 2017 Apr 28.
Patients with sarcoidosis present with a variety of symptoms which may impair many aspects of physical and mental well-being. Traditionally, clinicians have been concerned with physical health aspects of sarcoidosis, assessing disease activity and severity with radiological imaging, pulmonary function and blood tests. However, the most reported symptom of sarcoidosis patients, fatigue, has been shown not to correlate with the most commonly used parameters for monitoring disease activity. Studies have shown poor agreement between physicians and patients in assessing sarcoidosis symptoms. This underlines the importance of patient reported outcomes (PROs) in addition to traditional outcomes in order to provide a complete evaluation of the effects of interventions in clinical trials and everyday clinical assessment of sarcoidosis. We have undertaken a systematic review to identify and provide an overview of PRO concepts used in sarcoidosis assessment the past 20 years and to evaluate the tools used for measuring these concepts, called patient reported outcome measures (PROMs). Various PROMs have been used. By categorizing these PROMs according to outcome we identified the key PRO concepts for sarcoidosis to be Health Status and Quality of Life, Dyspnea, Fatigue, Depression, Anxiety and Stress and Miscellaneous. There is no perfect sarcoidosis-specific PROM to cover all concepts and future intervention studies should therefore contain multiple complementary questionnaires. Based on our findings we recommend the Fatigue Assessment Scale (FAS) for assessing fatigue. Dyspnea scores should be chosen based on their purpose; more research is needed to examine their validity in sarcoidosis. The Modified Medical Research Council Dyspnea Scale (MRC) can be used to screen for dyspnea and the Baseline Dyspnea Index (BDI) to detect changes in dyspnea. We recommend The World Health Organization Quality of Life assessment instrument (WHOQOL-100) for assessing quality of life, although a shorter questionnaire would be preferable. For assessing health status we recommend the Sarcoidosis Assessment Tool (SAT), and have great expectations for this new and promising assessment tool. Supplementary to the WASOG meeting of 2011's recommendation on assessing QoL, we recommend incorporating fatigue, dyspnea and HS assessment in clinical trials and everyday clinical assessment of sarcoidosis. .
结节病患者会出现多种症状，这些症状可能会损害身心健康的多个方面。传统上，临床医生关注结节病的身体健康方面，通过放射影像学、肺功能和血液检查来评估疾病活动度和严重程度。然而，结节病患者最常报告的症状——疲劳，已被证明与监测疾病活动度的最常用参数无关。研究表明，医生和患者在评估结节病症状方面的一致性较差。这凸显了患者报告结局（PROs）除传统结局之外的重要性，以便在临床试验和结节病的日常临床评估中对干预效果进行全面评估。我们进行了一项系统综述，以识别并概述过去20年中用于结节病评估的PRO概念，并评估用于测量这些概念的工具，即患者报告结局测量（PROMs）。已经使用了各种PROMs。通过根据结局对这些PROMs进行分类，我们确定结节病的关键PRO概念为健康状况和生活质量、呼吸困难、疲劳、抑郁、焦虑和压力以及其他。没有完美的针对结节病的PROM能涵盖所有概念，因此未来的干预研究应包含多个互补问卷。基于我们的研究结果，我们推荐使用疲劳评估量表（FAS）来评估疲劳。应根据目的选择呼吸困难评分；需要更多研究来检验其在结节病中的有效性。改良医学研究理事会呼吸困难量表（MRC）可用于筛查呼吸困难，基线呼吸困难指数（BDI）用于检测呼吸困难的变化。我们推荐使用世界卫生组织生活质量评估工具（WHOQOL - 100）来评估生活质量，不过较短的问卷会更可取。对于评估健康状况，我们推荐结节病评估工具（SAT），并对这个新的且有前景的评估工具寄予厚望。作为对2011年WASOG会议关于评估生活质量建议的补充，我们建议在结节病的临床试验和日常临床评估中纳入疲劳、呼吸困难和健康状况评估。
