Table 2.
Core Outcome | Measurement Instrument* | Number of Questions | Estimated Time Needed to Complete (min) | Cost (US$) | Core Outcome Measurement Set Configurations |
Optional Expanded Configurations |
||
---|---|---|---|---|---|---|---|---|
Minimum Acceptable | Minimum + SF-36 | Minimum + Cognitive Screen† | Minimum + SF-36 and Cognitive Screen† | |||||
Survival | N/A‡ | N/A | N/A | N/A | ✓ | ✓ | ✓ | ✓ |
Satisfaction with life and personal enjoyment (HQOL) | EQ-5D§ (3L or 5L version) | 6 | 2 | Usually free | ✓ | ✓ | ✓ | ✓ |
SF-36 version 2‖ (optional) | 36 | 9 | Variable | X | ✓ | X | ✓ | |
Mental Health | Hospital Anxiety and Depression Scale | 14 | 4 | Approximately $150 per 100 | ✓ | ✓ | ✓ | ✓ |
Impact of Event Scale–Revised¶ | 22 | 6 | No cost | ✓ | ✓ | ✓ | ✓ | |
Pain | EQ-5D pain question | 1 (accounted for in EQ-5D) | Accounted for in EQ-5D | Accounted for in EQ-5D | ✓ | ✓ | ✓ | ✓ |
Cognition | Montreal Cognitive Assessment-BLIND† | 13 | 5 | No cost | X | X | ✓ | ✓ |
Physical function** | None | — | — | — | — | — | — | — |
Muscle and/or nerve function** | None | — | — | — | — | — | — | — |
Pulmonary function** | None | — | — | — | — | — | — | — |
|
||||||||
Total number of questions in this Core Outcome Measurement Set configuration |
42 | 78 | 55 | 91 | ||||
Estimated time needed to complete this Core Outcome Measurement Set configuration, min | 12 | 21 | 17 | 26 |
Definition of abbreviations: HQOL = health-related quality of life; N/A = not applicable; SF-36 = 36-item Short Form Health Survey.
For more information about each instrument, including data on costs and licensing fees, please visit www.improvelto.com/instruments.
Although there was no consensus on a cognition measurement instrument, the Montreal Cognitive Assessment (MoCA) received the highest rating (55% agreed MoCA was “Critical” for inclusion) and has a version (i.e., MoCA-BLIND) that can be used via phone, like the rest of the Core Outcome Measurement Set; therefore, we encourage inclusion of this instrument in the Core Outcome Measurement Set. However, measurement properties of the MoCA have not yet been assessed in acute respiratory failure survivors. Use of MoCA must be registered at its website.
We strongly suggest, at a minimum, collecting date and location (e.g., home, hospital, or hospice) of death.
We recommend using the newer EQ-5D-5L instrument, which has five levels of responses for each question, rather than the EQ-5D-3L, which has three levels of responses. Licensing fees, as determined by the EuroQol Executive Office, are usually free of charge for academic research.
If research funding does not permit use of the SF-36 version 2, researchers may consider use of the freely available RAND 36-item Health Survey 1.0 questionnaire (RAND SF-36 v1). The RAND SF-36 v1 is similar to the SF-36 version 2 and is available free of charge. Its differences from the SF-36 version 2 are described elsewhere (37).
The Impact of Event Scale–Revised assesses post-traumatic stress disorder symptoms. Users must contact the Impact of Event Scale–Revised creator to register use.
There was no consensus on measurement instruments to include for these outcomes. However, if in-person assessments are part of a research protocol, the following tests for evaluating these core outcomes received the highest scores from the panel: Physical Function (6-min-walk test [50% agreed this was “Critical” for inclusion]), Muscle and/or Nerve Function (manual muscle test [49% agreed this was “Critical” for inclusion] and handgrip strength [46% agreed this was “Critical” for inclusion]), and Pulmonary Function (panel voted to exclude all tests that were considered [e.g., spirometry, St. George’s Respiratory Questionnaire]).