Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure

Thorax

Volumn 73, Issue 1, 2018, Pages 7-12

  Dinglas, Victor D ^a,b   Chessare, Caroline M ^a,b   Davis, Wesley E ^a   Parker, Ann ^a,b   Friedman, Lisa Aronson ^a,b   Colantuoni, Elizabeth ^a,c   Bingham, Clifton O ^a   Turnbull, Alison E ^a,b,c   Needham, Dale M ^a,b  

^a JOHNS HOPKINS UNIVERSITY   (United States)

^b JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

adult; follow up studies; intensive care; patient outcome assessment; patient centered outcomes research; respiratory

Indexed keywords

ACUTE RESPIRATORY FAILURE; ADULT; AGED; ARTICLE; COGNITION; CONSENSUS; CONTROLLED STUDY; FAMILY ATTITUDE; FEMALE; GENERAL PRACTITIONER; HEALTH SURVEY; HOSPITAL DISCHARGE; HUMAN; INTENSIVE CARE; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; MAJOR CLINICAL STUDY; MALE; MENTAL HEALTH; OUTCOME ASSESSMENT; PATIENT ATTITUDE; PATIENT-REPORTED OUTCOME; PHYSICAL PERFORMANCE; PRIORITY JOURNAL; RETURN TO WORK; SCIENTIST; SCORING SYSTEM; SOCIETY OF CRITICAL CARE MEDICINE POST INTENSIVE CARE SYNDROME; SURVIVAL RATE; ADOLESCENT; ADULT RESPIRATORY DISTRESS SYNDROME; FAMILY; MEDICAL RESEARCH; MIDDLE AGED; PERSONNEL; PSYCHOLOGY; QUESTIONNAIRE; SURVIVOR; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; BIOMEDICAL RESEARCH; FAMILY; FEMALE; HUMANS; MALE; MIDDLE AGED; OUTCOME ASSESSMENT (HEALTH CARE); RESEARCH PERSONNEL; RESPIRATORY DISTRESS SYNDROME, ADULT; SURVEYS AND QUESTIONNAIRES; SURVIVORS; YOUNG ADULT;

EID: 85039038178     PISSN: 00406376     EISSN: 14683296     Source Type: Journal    
DOI: 10.1136/thoraxjnl-2017-210234     Document Type: Article

References (46)

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;4:203-12.
2. Herridge MS, Cheung AM, Tansey CM, et al. One-year outcomes in survivors of the acute respiratory distress syndrome. N Engl J Med 2003;348:683-93.
3. Huang M, Parker AM, Bienvenu OJ, et al. Psychiatric symptoms in acute respiratory distress syndrome survivors: a 1-year national multicenter study. Crit Care Med 2016;44:954-65.
4. 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;42:849-59.
5. Angus DC, Mira JP, Vincent JL. Improving clinical trials in the critically ill. Crit Care Med 2010;38:527-32.
6. Angus DC, Carlet J. 2002 Brussels Roundtable Participants. Surviving intensive care: a report from the 2002 Brussels Roundtable. Intensive Care Med 2003;29:368-77.
7. Spragg RG, Bernard GR, Checkley W, et al. Beyond mortality: future clinical research in acute lung injury. Am J Respir Crit Care Med 2010;181:1121-7.
8. 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;40:502-9.
9. Deutschman CS, Ahrens T, Cairns CB, et al. Multisociety Task Force for Critical Care Research: key issues and recommendations. Crit Care Med 2012;40:254-60.
10. Carson SS, Goss CH, Patel SR, et al. An official American Thoracic Society research statement: comparative effectiveness research in pulmonary, critical care, and sleep medicine. Am J Respir Crit Care Med 2013;188:1253-61.
11. 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;44:1267-77.
12. Blackwood B, Marshall J, Rose L. Progress on core outcome sets for critical care research. Curr Opin Crit Care 2015;21:439-44.
13. Needham DM. Understanding and improving clinical trial outcome measures in acute respiratory failure. Am J Respir Crit Care Med 2014;189:875-7.
14. Clarke M. Standardising outcomes for clinical trials and systematic reviews. Trials 2007;8:39.
15. Williamson PR, Altman DG, Blazeby JM, et al. Developing core outcome sets for clinical trials: issues to consider. Trials 2012;13:132.
16. Boers M, Kirwan JR, Wells G, et al. Developing core outcome measurement sets for clinical trials: OMERACT filter 2.0. J Clin Epidemiol 2014;67:745-53.
17. Truwit JD, Bernard GR, Steingrub J, et al. Rosuvastatin for sepsis-associated acute respiratory distress syndrome. N Engl J Med 2014;370:2191-200.
18. Dinglas VD, Hopkins RO, Wozniak AW, et al. One-year outcomes of rosuvastatin versus placebo in sepsis-associated acute respiratory distress syndrome: prospective followup of SAILS randomised trial. Thorax 2016;71:401-10.
19. Cella D, Riley W, Stone A, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult selfreported health outcome item banks: 2005-2008. J Clin Epidemiol 2010;63:1179-94.
20. World Health Organization. International classification of functioning, disability and Health. Geneva, Switzerland: World Health Organization, 2001.
21. Elliott D, Davidson JE, Harvey MA, et al. Exploring the scope of post-intensive care syndrome therapy and care: engagement of non-critical care providers and survivors in a second stakeholders meeting. Crit Care Med 2014;42:2518-26.
22. 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;97:167-74.
23. Rubenfeld GD. Surveys: an introduction. Respir Care 2004;49:1181-5.
24. Feinstein AR, Cicchetti DV. High agreement but low kappa: i. the problems of two paradoxes. J Clin Epidemiol 1990;43:543-9.
25. Desai SV, Law TJ, Needham DM. Long-term complications of critical care. Crit Care Med 2011;39:371-9.
26. Girard TD, Dittus RS, Ely EW. Critical illness brain injury. Annu Rev Med 2016;67:497-513.
27. 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.
28. 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;26:456-65.
29. Dinglas VD, Gifford JM, Husain N, et al. Quality of life before intensive care using EQ- 5D: patient versus proxy responses. Crit Care Med 2013;41:9-14.
30. Gifford JM, Husain N, Dinglas VD, et al. Baseline quality of life before intensive care: a comparison of patient versus proxy responses. Crit Care Med 2010;38:855-60.
31. Scales DC, Tansey CM, Matte A, et al. Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers. Intensive Care Med 2006;32:1826-31.
32. Rogers J, Ridley S, Chrispin P, et al. Reliability of the next of kins' estimates of critically ill patients' quality of life. Anaesthesia 1997;52:1137-43.
33. Elliott D, Lazarus R, Leeder SR. Proxy respondents reliably assessed the quality of life of elective cardiac surgery patients. J Clin Epidemiol 2006;59:153-9.
34. Coppola KM, Ditto PH, Danks JH, et al. Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives. Arch Intern Med 2001;161:431-40.
35. Downey L, Au DH, Curtis JR, et al. Life-sustaining treatment preferences: matches and mismatches between patients' preferences and clinicians' perceptions. J Pain Symptom Manage 2013;46:9-19.
36. McPhail S, Beller E, Haines T. Two perspectives of proxy reporting of health-related quality of life using the Euroqol-5D, an investigation of agreement. Med Care 2008;46:1140-8.
37. Pickard AS, Knight SJ. Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Med Care 2005;43:493-9.
38. Wolkewitz M, Cooper BS, Bonten MJ, et al. Interpreting and comparing risks in the presence of competing events. BMJ 2014;349:g5060.
39. van Walraven C, McAlister FA. Competing risk bias was common in Kaplan-Meier risk estimates published in prominent medical journals. J Clin Epidemiol 2016;69:170-3.
40. 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;41:1237-51.
41. Harvey MA, Davidson JE. Postintensive care syndrome: right care, right now⋯and later. Crit Care Med 2016;44:381-5.
42. 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.
43. 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.
44. Gargon E, Gurung B, Medley N, et al. Choosing important health outcomes for comparative effectiveness research: a systematic review. Value Health 2014;17:A435.
45. Tunis SR, Clarke M, Gorst SL, et al. Improving the relevance and consistency of outcomes in comparative effectiveness research. J Comp Eff Res 2016;5:193-205.
46. Young B, Bagley H. Including patients in core outcome set development: issues to consider based on three workshops with around 100 international delegates. Research Involvement and Engagement 2016;2:25.