Understanding patient-important outcomes after critical illness: a synthesis of recent qualitative, empirical, and consensus-related studies

Victor D Dinglas, Leeza N Faraone, Dale M Needham, Victor D Dinglas, Leeza N Faraone, Dale M Needham

Abstract

Purpose of review: Patients surviving critical illness frequently experience long-lasting morbidities. Consequently, researchers and clinicians are increasingly focused on evaluating and improving survivors' outcomes after hospital discharge. This review synthesizes recent research aimed at understanding the postdischarge outcomes that patients consider important (i.e., patient-important outcomes) for the purpose of advancing future clinical research in the field.

Recent findings: Across multiple types of studies, patients, family members, researchers, and clinicians have consistently endorsed physical function, cognition, and mental health as important outcomes to evaluate in future research. Aspects of social health, such as return to work and changes in interpersonal relationships, also were noted in some research publications. Informed by these recent studies, an international Delphi consensus process (including patient and caregiver representatives) recommended the following core set of outcomes for use in all studies evaluating acute respiratory failure survivors after hospital discharge: survival, physical function (including muscle/nerve function and pulmonary function), cognition, mental health, health-related quality of life, and pain. The Delphi panel also reached consensus on recommended measurement instruments for some of these core outcomes.

Summary: Recent studies have made major advances in understanding patient-important outcomes to help guide future clinical research aimed at improving ICU survivors' recovery.

Figures

Box 1
Box 1
no caption available
FIGURE 1
FIGURE 1
Summary of thematic analysis from qualitative interviews of acute respiratory failure survivors [31▪] organized using the National Institutes of Health's Patient-Reported Outcomes Measurement Information System framework [32].
FIGURE 2
FIGURE 2
Summary of the modified Delphi consensus process.
FIGURE 3
FIGURE 3
Summary of understanding patient-important outcomes in creating a core outcome set [▪▪]/core outcome measurement set [▪▪].

References

    1. Spragg RG, Bernard GR, Checkley W, et al. Beyond mortality: future clinical research in acute lung injury. Am J Respir Crit Care Med 2010; 181:1121–1127.
    1. Wunsch H, Linde-Zwirble WT, Angus DC, et al. The epidemiology of mechanical ventilation use in the United States. Crit Care Med 2010; 38:1947–1953.
    1. Carson SS, Cox CE, Holmes GM, et al. The changing epidemiology of mechanical ventilation: a population-based study. J Intensive Care Med 2006; 21:173–182.
    1. Needham DM, Bronskill SE, Calinawan JR, et al. Projected incidence of mechanical ventilation in Ontario to 2026: preparing for the aging baby boomers. Crit Care Med 2005; 33:574–579.
    1. Pfoh ER, Wozniak AW, Colantuoni E, et al. Physical declines occurring after hospital discharge in ARDS survivors: a 5-year longitudinal study. Intensive Care Med 2016; 42:1557–1566.
    1. Herridge MS, Tansey CM, Matte A, et al. Functional disability 5 years after acute respiratory distress syndrome. N Engl J Med 2011; 364:1293–1304.
    1. Fan E, Dowdy DW, Colantuoni E, et al. Physical complications in acute lung injury survivors: a two-year longitudinal prospective study. Crit Care Med 2014; 42:849–859.
    1. de Azevedo JRA, Montenegro WS, Rodrigues DP, et al. Long-term cognitive outcomes among unselected ventilated and nonventilated ICU patients. J Intensive Care 2017; 5:18.
    1. Wilcox ME, Brummel NE, Archer K, et al. Cognitive dysfunction in ICU patients: risk factors, predictors, and rehabilitation interventions. Crit Care Med 2013; 41:S81–98.
    1. Needham DM, Colantuoni E, Dinglas VD, et al. Rosuvastatin versus placebo for delirium in intensive care and subsequent cognitive impairment in patients with sepsis-associated acute respiratory distress syndrome: an ancillary study to a randomised controlled trial. Lancet Respir Med 2016; 4:203–212.
    1. Pandharipande PP, Girard TD, Jackson JC, et al. Long-term cognitive impairment after critical illness. N Engl J Med 2013; 369:1306–1316.
    1. Nikayin S, Rabiee A, Hashem MD, et al. Anxiety symptoms in survivors of critical illness: a systematic review and meta-analysis. Gen Hosp Psychiatry 2016; 43:23–29.
    1. Parker AM, Sricharoenchai T, Raparla S, et al. Posttraumatic stress disorder in critical illness survivors: a metaanalysis. Crit Care Med 2015; 43:1121–1129.
    1. Rabiee A, Nikayin S, Hashem MD, et al. Depressive symptoms after critical illness: a systematic review and meta-analysis. Crit Care Med 2016; 44:1744–1753.
    1. Needham DM, Davidson J, Cohen H, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med 2012; 40:502–509.
    1. Cuthbertson BH, Roughton S, Jenkinson D, et al. Quality of life in the five years after intensive care: a cohort study. Crit Care 2010; 14:R6.
    1. Dowdy DW, Eid MP, Sedrakyan A, et al. Quality of life in adult survivors of critical illness: a systematic review of the literature. Intensive Care Med 2005; 31:611–620.
    1. Kamdar BB, Huang M, Dinglas VD, et al. Joblessness and lost earnings after acute respiratory distress syndrome in a 1-year national multicenter study. Am J Respir Crit Care Med 2017; 196:1012–1020.
    1. Kamdar BB, Sepulveda KA, Chong A, et al. Return to work and lost earnings after acute respiratory distress syndrome: a 5-year prospective, longitudinal study of long-term survivors. Thorax 2018; 73:125–133.
    1. Ruhl AP, Huang M, Colantuoni E, et al. Healthcare resource use and costs in long-term survivors of acute respiratory distress syndrome: a 5-year longitudinal cohort study. Crit Care Med 2017; 45:196–204.
    1. Ruhl AP, Lord RK, Panek JA, et al. Healthcare resource use and costs of two-year survivors of acute lung injury. An observational cohort study. Ann Am Thorac Soc 2015; 12:392–401.
    1. Ruhl AP, Huang M, Colantuoni E, et al. Healthcare utilization and costs in ARDS survivors: a 1-year longitudinal national US multicenter study. Intensive Care Med 2017; 43:980–991.
    1. Turnbull AE, Rabiee A, Davis WE, et al. Outcome measurement in ICU survivorship research from 1970 to 2013: a scoping review of 425 publications. Crit Care Med 2016; 44:1267–1277.
    2. A scoping review that empirically demonstrates the heterogeneity in outcomes and outcome measurement instruments used in the growing field of ICU survivorship research; thus, motivating the need for a core set of outcomes and measurement instruments in future research studies.

    1. Domecq JP, Prutsky G, Wang Z, et al. Eliciting patient perspective in patient-centered outcomes research: a meta narrative systematic review. 2012; Rochester: Mayo Clinic, Available at: . [Accessed 4 June 2018].
    1. Williamson PR, Altman DG, Blazeby JM, et al. Developing core outcome sets for clinical trials: issues to consider. Trials 2012; 13:132.
    1. Kirkham JJ, Dwan KM, Altman DG, et al. The impact of outcome reporting bias in randomised controlled trials on a cohort of systematic reviews. BMJ 2010; 340:c365.
    1. de Grooth H-J, Parienti J-J, Oudemans-van Straaten HM. Should we rely on trials with disease- rather than patient-oriented endpoints? Intensive Care Med 2018; 44:464–466.
    1. Gaudry S, Messika J, Ricard J-D, et al. Patient-important outcomes in randomized controlled trials in critically ill patients: a systematic review. Ann Intensive Care 2017; 7:28.
    2. A systematic review demonstrating that patient-important outcomes were infrequently designated as a primary outcome in randomized clinical trials in critically ill patients.

    1. Trujols J, Portella MJ, Iraurgi I, et al. Patient-reported outcome measures: are they patient-generated, patient-centred or patient-valued? J Ment Health 2013; 22:555–562.
    1. Guyatt G, Montori V, Devereaux PJ, et al. Patients at the center: in our practice, and in our use of language. ACP J Club 2004; 140:A11–A12.
    1. Eakin MN, Patel Y, Mendez-Tellez P, et al. Patients’ outcomes after acute respiratory failure: a qualitative study with the PROMIS framework. Am J Crit Care 2017; 26:456–465.
    2. A qualitative study of recovery after hospital discharge in 48 acute respiratory failure (ARF) survivors from across the United States.

    1. Carle AC, Riley W, Hays RD, Cella D. Confirmatory factor analysis of the patient-reported outcomes measurement information system (PROMIS) adult domain framework using item response theory scores. Med Care 2015; 53:894–900.
    1. Chan KS, Aronson FL, Dinglas VD, et al. Are physical measures related to patient-centred outcomes in ARDS survivors? Thorax 2017; 72:884–892.
    2. The analysis uses data from two large-scale follow-up studies of acute respiratory distress syndrome survivors to evaluate associations between physical outcome measures (e.g., 6-min walk test, ADLs) and patient-centered outcomes (e.g., quality of life, rehospitalization, and being alive and at home).

    1. Nedergaard HK, Haberlandt T, Reichmann PD, et al. Patients’ opinions on outcomes following critical illness. Acta Anaesthesiol Scand 2018; 62:531–539.
    2. A study in Denmark evaluating outcomes important to ICU survivors and assessing perspectives of nurses and anesthesiologists caring for ICU patients.

    1. Hashem MD, Nallagangula A, Nalamalapu S, et al. Patient outcomes after critical illness: a systematic review of qualitative studies following hospital discharge. Crit Care 2016; 20:345.
    2. A systematic review of qualitative studies of ICU survivors’ recovery after hospital discharge.

    1. Dinglas VD, Chessare CM, Davis WE, et al. Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure. Thorax 2018; 73:7–12.
    2. A national/international evaluation of patient, family, and researcher perspectives regarding which patient outcomes should be measured in studies evaluating ARF survivors after hospital discharge.

    1. World Health Organization. International classification of functioning, disability, and health: ICF. Geneva: World Health Organization; 2001.
    1. Hodgson CL, Turnbull AE, Iwashyna TJ, et al. Core domains in evaluating patient outcomes after acute respiratory failure: international multidisciplinary clinician consultation. Phys Ther 2017; 97:168–174.
    2. An evaluation of clinician perspectives on patient outcomes that should be measured in studies evaluating ARF survivors after hospital discharge.

    1. Brinkman S, Bakhshi-Raiez F, Abu-Hanna A, et al. Determinants of mortality after hospital discharge in ICU patients: literature review and Dutch cohort study. Crit Care Med 2013; 41:1237–1251.
    1. Colantuoni E, Scharfstein DO, Wang C, et al. Statistical methods to compare functional outcomes in randomized controlled trials with high mortality. BMJ 2018; 360:j5748.
    2. A methodological article that reviews and empirically illustrates three statistical approaches to analyze functional outcomes (e.g., quality of life) in the setting of ‘truncation due to morality’.

    1. Clarke M. Standardising outcomes for clinical trials and systematic reviews. Trials 2007; 8:39.
    1. Dwan K, Altman DG, Arnaiz JA, et al. Systematic review of the empirical evidence of study publication bias and outcome reporting bias. PLoS One 2008; 3:e3081.
    1. Blackwood B, Marshall J, Rose L. Progress on core outcome sets for critical care research. Curr Opin Crit Care 2015; 21:439–444.
    1. Turnbull AE, Sepulveda KA, Dinglas VD, et al. Core domains for clinical research in acute respiratory failure survivors: an international modified Delphi consensus study. Crit Care Med 2017; 45:1001–1010.
    2. The report of an international consensus process to establish a recommended set of outcomes that should be measured in all studies evaluating ARF survivors after hospital discharge (refer to www.improveLTO.com/coms for more information).

    1. Needham DM, Sepulveda KA, Dinglas VD, et al. Core outcome measures for clinical research in acute respiratory failure survivors. An international modified Delphi consensus study. Am J Respir Crit Care Med 2017; 196:1122–1130.
    2. The report of an international consensus process to establish a recommended set of outcome measurement instruments that should be used in all studies evaluating ARF survivors after hospital discharge (refer to www.improveLTO.com/coms for more information).

Source: PubMed

3
Suscribir