As part of this project, we are creating a database of recommended survey instruments and clinical testing methods for evaluating the long-term physical, cognitive, and mental health outcomes of survivors of acute respiratory distress syndrome (ARDS)/acute respiratory failure (ARF) (see AJRCCM. 2014; 189:875-7). This project is registered with the COMET Initiative, a network promoting the creation of standard sets of core outcome measures for clinical trials (COMET Initiative Page for this project).

The consensus process, designed to yield this list of recommended instruments and testing methods, is expected to be completed in 2017. While awaiting results of this formal consensus process, we have compiled information on survey instruments and clinical testing methods suggested by participants in our project (i.e., clinical research, clinicians, patients, caregivers and funding bodies representatives) and used in previous studies of ARDS/ARF survivors. This list is not comprehensive, but is provided as an exemplar, and may be helpful to investigators considering post-discharge outcome measures for clinical studies. Some of these instruments have been used as part of the ARDSNet Long-Term Outcomes Study (“ALTOS” – see BMJ. 2013; 346:f1532AJRCCM. 2013; 188:567-576AJRCCM. 2014; 189:1214-24; Clinical Trials Registration: NCT00719446) Moreover, a recent paper by Heyland DK, et al. provides suggestions for post-discharge outcomes assessments based on expert opinion. (see Clin Nutr. 2015 Jul 16. pii: S0261-5614(15)00177-6.)

A part of this project involved a systematic review of the performance characteristics of instruments evaluating physical, cognitive, and mental health outcomes in ICU survivors. Click here for detailed information about these instruments from this review

Please see the list of instruments below:


Mental Health 

Muscle and/or Nerve Function 


Physical Function 

Pulmonary Function 

Quality of Life

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This work is still in-progress. We expect many changes and updates. To receive notifications of new or updated resources from this project, please subscribe to our newsletter.

Creative Commons License This work, created by Dale M. Needham, MD, PhD and the Johns Hopkins University Outcomes After Critical Illness & Surgery (OACIS) Group, was funded by NHLBI R24HL111895, and is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.