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).
Alison Turnbull, DVM, MPH, PhD discusses (click image for the video) the heterogeneity in outcome measures in our field and the need for a Core Outcome Measurement Set (COMS) to standardize reporting of important outcomes (see COMS at www.improvelto.com/coms).
As part of the consensus process, we have compiled information on survey instruments and clinical testing methods used in previous studies of ARDS/ARF survivors and suggestions by participants in our consensus project (i.e., clinical researchers, clinicians, patients, caregivers and funding body representatives). This list is not comprehensive, but is provided as 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:f1532; AJRCCM. 2013; 188:567-576; AJRCCM. 2014; 189:1214-24; Clinical Trials Registration: NCT00719446) Moreover, a recent paper by 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
- Cognitive Screening
- Executive Functioning
- Language,Verbal Fluency, and Naming
- Mental Processing Speed
- Working Memory
- Post-Traumatic Stress Disorder
- ICU Memory Tool (ICUMT)
Muscle and/or Nerve Function
- Chronic Pain Grade Questionnaire (CPGQ)
- EQ-5D (3 Level or 5 Level) - Pain Question
- McGill Pain Questionnaire (MPQ)
- Medical Outcomes Study Short Form-12 v2-Pain Question
- Numeric Rating Scale (NRS)
- Pain Visual Analog Scale (Pain VAS)
- PROMIS-Short Form v1.0 Pain Interference 8a
- PROMIS-Short Form v1.0-Pain Intensity 3a
- Acute Care Index of Function (ACIF)
- Body Composition
- Cardiopulmonary Exercise Test (CPET)
- Chelsea Critical Care Physical Assessment Tool (CPAx)
- Critical Care Functional Rehabilitation Outcome Measure (CcFROM)
- de Morton Mobility Index (DEMMI)
- Functional Assessment Measure (FAM)
- Functional Independence Measure (FIM)
- Functional Status Score for the Intensive Care Unit (FSS-ICU) – English Version
- Functional Status Score for the Intensive Care Unit (FSS-ICU) – Other Languages
- ICU Mobility Scale (IMS)
- Manchester Mobility Score (MMS)
- Perme Score
- Physical Function in Intensive Care Test scored (PFIT-s)
- Short Physical Performance Battery (SPPB) | Quality Assurance
- SICU Optimal Mobilisation Score (SOMS)
Quality of Life
- Assessment of Quality of Life - 8D (AQoL-8D)
- EQ-5D (3 Level or 5 Level)
- Medical Outcomes Study Short Form-12 v2 (SF-12 v2)
- Medical Outcomes Short Form-36 v2 (SF-36 v2)
- Nottingham Health Profile (NHP)
- PROMIS-Global Short Form v1.1
- RAND 36-Item Health Survey 1.0 Questionnaire
- Sickness Impact Profile (SIP)
Return to Work
- American Thoracic Society: Videos demonstrating common outcome measures
- Evaluating physical functioning in critical care: Considerations for clinical practice and research. Parry, et al. Critical Care. 2017; 21:249.
- Should we rely on trials with disease rather than patient‑oriented endpoints? Grooth, et al. Intensive Care. 2018; 44:464–466.
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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.
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.