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Outcomes after Critical Illness

Areas of best practice related to clinical and research outcomes


Dale M. Needham (MD, PhD) and the Johns Hopkins University Outcomes After Critical Illness & Surgery (OACIS) Group have embarked upon a NHLBI-funded resource-related research project entitled “Improving Long-Term Outcomes Research for Acute Respiratory Failure”.

The project is aimed at creating resources for researchers conducting long-term follow-up of patients surviving acute respiratory failure and acute respiratory distress syndrome (ARF/ARDS).

The project has three overarching aims in advancing long-term outcomes research for ARF/ARDS:

  • To recommend long-term outcome measures and associated measurement instruments for research in this patient population.
  • To create and disseminate practical tools for maximizing patient cohort retention for longitudinal long-term outcomes research studies.
  • To create and disseminate statistical tools and programs to appropriately address the competing risk of mortality in analyzing long-term functional outcomes in this patient population.

As part of this project, they 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). The project is registered with the COMET Initiative, a network promoting the creation of standard sets of core outcome measures for clinical trials.

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, the team has compiled information on survey instruments and clinical testing methods suggested by participants in this project  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).

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.

Key Studies

Turnbull AE, Sepulveda KA, Dinglas VD, Bingham CO, Needham, DM. Core domains for clinical research in acute respiratory failure survivors: an international modified Delphi consensus study. Critical Care Medicine. 2017; ePub (ahead of print).

Turnbull AE, Rabiee A, Davis WE, Nasser MF, Venna VR, Lolitha R, Hopkins RO, Bienvenu OJ, Robinson KA, Needham DM. Outcome measurement in ICU survivorship research from 1970-2013: a scoping review of 425 publications. Critical Care Medicine. 2016 Jul;44(7):1267-77.

Hodgson CL, Turnbull AE, Iwashyna TJ, Parker A, Davis W, Bingham CO III, Watts NR, Finfer S, Needham DM. Core Domains in Evaluating Patient Outcomes After Acute Respiratory Failure: International Multidisciplinary Clinician Consultation. Physical Therapy (2017) 97 (2): 167-174.

Hashem MD, Nallagangula A, Nalamalapu S, Nunna K, Nausran U, Robinson KA, Dinglas VD, Needham DM, Eakin MN. Patient outcomes after critical illness: a systematic review of qualitative studies following hospital discharge. Critical Care. 2016 Oct 26;20(1):345

Major ME, Kwakman R, Kho ME, Connolly B, McWilliams D, Denehy L, Hanekom S, Patman S, Gosselink R, Jones C, Nollet F, Needham DM, Engelbert HH, van der Schaaf M. Surviving critical illness: what is next? An expert consensus statement on physical rehabilitation after hospital discharge. Critical Care 2016 20:354

Parry SM, Denehy L, Beach LJ, Berney S, Williamson C, Granger CL. Functional outcomes in ICU – what should we be using? - an observational study. Critical Care 2015 19:127

A link to the ImproveLTO website can be found here.

UK Rehabilitation Outcomes Collaborative (UKROC).

The UK specialist Rehabilitation Outcomes Collaborative (UK ROC) was set up through a Department of Health NIHR Programme Grant in September 2008 to develop a national database for collating case episodes for inpatient rehabilitation.
During the first 5 years it focused on neurorehabilitation and ultimately included data from all specialist Level 1 and 2 neurorehabilitation services, across the UK.
The database development was undertaken in collaboration with the British Society of Rehabilitation Medicine (BSRM) and the Australasian Rehabilitation Outcome Centre (AROC). It has been led by Professor Turner-Stokes and is housed at Northwick Park Hospital in London.

Since April 2013, UKROC is now commissioned by NHS England to provide the commissioning dataset for all specialist neurorehabilitation services (levels 1 and 2) across England. Registration and data reporting to the UKROC database are mandated requirements, so any unit with ambitions to be designated a Level 1 or 2 service must be reporting the mandated UKROC dataset

The UKROC database records three types of data:

  1. Rehabilitation Needs – documenting the individual requirements for rehabilitation.
  2. Input – documenting the services actually provided to meet those needs so that unmet needs can be identified and also the reasons for variance can be recorded.
  3. Outcomes – the gains that are made during rehabilitation
  4. Cost-efficiency – the time to offset the cost of rehabilitation by savings in ongoing care.

The full UKROC dataset represents the inpatient rehabilitation subset of the Long Term neurological Conditions dataset. It comprises 30 items of demographic and process data for each admitted case episode together with:

  • The Rehabilitation Complexity Scale (RCS-E) (as a measure of rehabilitation needs)
  • At least one of an agreed set of outcome measures which includes:
    • Full dataset - The UK FIM ± FAM
    • Minimum dataset - Barthel index
  • The Northwick Park Dependency Scale and Care Needs Assessment

The UKROC dataset tools and software are provided free of charge to units who submit their data to the UKROC database

Training courses in use of the various outcome measures and software are provided through the UKROC centre at Northwick Park.

Further information about UKROC, the various clinical tools, and training events can be found using the links below:

Kings College London


Further information can also be found in the Major Trauma section of this website.

Chelsea Critical Care Physical Assessment Tool (CPAx)

The Chelsea Critical Care Physical Assessment Tool (CPAx) was first published in 2013 (after commencing development in 2009).

It is a numeric and pictorial composite of 10 commonly assessed components of physical function graded on a 6-point Guttman Scale, from complete dependence to independence (0 to 5).

  • Respiratory Function
  • Cough
  • Moving within the bed
  • Supine to sitting on the edge of the bed
  • Dynamic Sitting
  • Standing Balance
  • Sit to Stand
  • Transferring bed to chair
  • Stepping
  • Grip Strength

The component scores are added to give an overall score out of 50; 0 being the most-dependent patient, and 50 representing full independence.

Key Studies

Corner EJ, Wood H, Englebretsen C, Thomas A, Grant RL, Nikoletou D, Soni N.The Chelsea critical care physical assessment tool (CPAx): validation of an innovative new tool to measure physical morbidity in the general adult critical care population; an observational proof-of-concept pilot study.Physiotherapy. 2013 Mar;99(1):33-41

Corner EJ, Soni N, Handy JM, Brett SJ. Construct validity of the Chelsea critical care physical assessment tool: an observational study of recovery from critical illness. Critical Care. 2014 Mar 27;18(2):R55

Corner EJ, Hichens LV, Attrill KM, Vizcaychipi MP, Brett SJ, Handy JM. The responsiveness of the Chelsea Critical Care Physical Assessment tool in measuring functional recovery in the burns critical care population: an observational study. Burns. 2015 Mar;41(2):241-7.

Corner EJ, Handy JM, Brett SJ. eLearning to facilitate the education and implementation of the Chelsea Critical Care Physical Assessment: a novel measure of function in critical illness. BMJ Open. 2016 Apr 11;6(4)

ICU Mobility Scale

The ICU Mobility Scale was developed in 2012 by a multi-disciplinary group of critical care clinicians from the Australian and New Zealand Intensive Care Society Clinical Trials Group and Johns Hopkins Hospital, Baltimore (US).

The ICU mobility scale (IMS) was developed by the multidisciplinary
group using both levels of mobilization published from existing studies of early mobilization in the ICU and the unpublished scale from Johns Hopkins Hospital.

The reliability assessment was conducted at two large intensive care units with a varied clinical case mix, including surgical, medical and trauma patients, and included nurses and junior and senior physical therapists (see below). The overall intraclass correlation between raters was 0.80 (95% CI 0.75-0.84).

Hodgson C, Needham D, Haines K, Bailey M, Ward A, Harrold M, Young P, Zanni J, Buhr H, Higgins A, Presneill J, Berney S. Feasibility and inter-rater reliability of the ICU Mobility Scale. Heart & Lung. 2014 43(1);19–24

Tipping CJ, Bailey MJ, Bellomo R, Berney S, Buhr H, Denehy L, Harrold M, Holland A, Higgins AM, Iwashyna TJ, Needham D. The ICU Mobility Scale has Construct and Predictive Validity and Is Responsive: a Multicenter Observational Study. Annals of the American Thoracic Society. 2016 13(6); 887-893