title: Outcome Measurement in ICU Survivorship Research From 1970 to 2013: A Scoping Review of 425 Publications.
abstract: OBJECTIVE
  To evaluate the study designs and measurement instruments used to assess physical, cognitive, mental health, and quality of life outcomes of survivors of critical illness over more than 40 years old as a first step toward developing a core outcome set of measures for future trials to improve outcomes in ICU survivors.
  
  
  METHODS
  Scoping review.
  
  
  METHODS
  Published articles that included greater than or equal to one postdischarge measure of a physical, cognitive, mental health, or quality of life outcome in more than or equal to 20 survivors of critical illness published between 1970 and 2013. Instruments were classified using the World Health Organization's International Classification of Functioning, Disability, and Health framework.
  
  
  METHODS
  ICU survivors.
  
  
  METHODS
  None.
  
  
  RESULTS
  We reviewed 15,464 abstracts, and identified 425 eligible articles, including 31 randomized trials (7%), 116 cross-sectional studies (27%), and 278 cohort studies (65%). Cohort studies had a median (interquartile range) sample size of 96 survivors (52-209), with 38% not fully reporting loss to follow-up. A total of 250 different measurement instruments were used in these 425 articles. Among eligible articles, 25 measured physical activity limitations (6%), 40 measured cognitive activity limitations (9%), 114 measured mental health impairment (27%), 196 measured participation restriction (46%), and 276 measured quality of life (65%).
  
  
  CONCLUSIONS
  Peer-reviewed publications reporting patient outcomes after hospital discharge for ICU survivors have grown from 3 in the 1970s to more than 300 since 2000. Although there is evidence of consolidation in the instruments used for measuring participation restriction and quality of life, the ability to compare results across studies remains impaired by the 250 different instruments used. Most articles described cohort studies of modest size with a single follow-up assessment using patient-reported measures of participation restriction and quality of life. Development of a core outcome set of valid, reliable, and feasible measures is essential to improving the outcomes of critical illness survivors.
authors.affiliation: 1Outcomes After Critical Illness and Surgery Group, Johns Hopkins University, Baltimore, MD. 2Division of Pulmonary and Critical Care Medicine, School of Medicine, Johns Hopkins University, Baltimore, MD. 3Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD. 4Department of Medicine, Pulmonary and Critical Care Division, Intermountain Medical Center, Murray, UT. 5Center for Humanizing Critical Care, Intermountain Healthcare, Murray, UT. 6Department of Psychology and Neuroscience Center, Brigham Young University, Provo, UT. 7Department of Psychiatry and Behavior Sciences, School of Medicine, Johns Hopkins University, Baltimore, MD. 8Department of Health Policy & Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD. 9Department of Medicine, School of Medicine, Johns Hopkins University, Baltimore, MD. 10Department of Physical Medicine and Rehabilitation, School of Medicine, Johns Hopkins University, Baltimore, MD.
authors.forename: Alison E
authors.initials: AE
authors.lastname: Turnbull
authors.forename: Anahita
authors.initials: A
authors.lastname: Rabiee
authors.forename: Wesley E
authors.initials: WE
authors.lastname: Davis
authors.forename: Mohamed Farhan
authors.initials: MF
authors.lastname: Nasser
authors.forename: Venkat Reddy
authors.initials: VR
authors.lastname: Venna
authors.forename: Rohini
authors.initials: R
authors.lastname: Lolitha
authors.forename: Ramona O
authors.initials: RO
authors.lastname: Hopkins
authors.forename: O Joseph
authors.initials: OJ
authors.lastname: Bienvenu
authors.forename: Karen A
authors.initials: KA
authors.lastname: Robinson
authors.forename: Dale M
authors.initials: DM
authors.lastname: Needham
mesh_terms: D006304:Health Status; D006801:Humans; D007362:Intensive Care Units; D008603:Mental Health; D017063:Outcome Assessment, Health Care / Q000379:methods* / Q000639:trends; D011788:Quality of Life; D012107:Research Design; D016019:Survival Analysis; D017741:Survivors