Guyatt G, Montori V, Devereaux PJ, Schünemann H, Bhandari M. Patients at the center: in our practice, and in our use of language. ACP J Club. 2004;140(1):A11–2.
PubMed
Google Scholar
Wittes J, Lakatos E, Probstfield J. Surrogate endpoints in clinical trials: cardiovascular diseases. Stat Med. 1989;8(4):415–25.
Article
CAS
PubMed
Google Scholar
Pino C, Boutron I, Ravaud P. Outcomes in registered, ongoing randomized controlled trials of patient education. PLoS ONE. 2012;7(8):e42934.
Article
CAS
PubMed
PubMed Central
Google Scholar
Brower R, Matthay M, Moris A. Ventilation with lower tidal volumes as compared with traditional tidal volumes for acute lung injury and the acute respiratory distress syndrome. The Acute Respiratory Distress Syndrome Network. N Engl J Med. 2000;342(18):1301–8.
Article
Google Scholar
Guerin C, Reignier J, Richard J-C, Beuret P, Gacouin A, Boulain T, et al. Prone positioning in severe acute respiratory distress syndrome. N Engl J Med. 2013;368(23):2159–68.
Article
CAS
PubMed
Google Scholar
Angus DC, Carlet J. 2002 Brussels Roundtable Participants. Surviving intensive care: a report from the 2002 Brussels Roundtable. Intensive Care Med. 2003;29(3):368–77.
Article
PubMed
Google Scholar
Desai SV, Law TJ, Needham DM. Long-term complications of critical care. Crit Care Med. 2011;39(2):371–9.
Article
PubMed
Google Scholar
Stevens RD, Dowdy DW, Michaels RK, Mendez-Tellez PA, Pronovost PJ, Needham DM. Neuromuscular dysfunction acquired in critical illness: a systematic review. Intensive Care Med. 2007;33(11):1876–91.
Article
PubMed
Google Scholar
Van der Schaaf M, Beelen A, Dongelmans DA, Vroom MB, Nollet F. Poor functional recovery after a critical illness: a longitudinal study. J Rehabil Med. 2009;41(13):1041–8.
Article
PubMed
Google Scholar
Chelluri L, Im KA, Belle SH, Schulz R, Rotondi AJ, Donahoe MP, et al. Long-term mortality and quality of life after prolonged mechanical ventilation. Crit Care Med. 2004;32(1):61–9.
Article
PubMed
Google Scholar
Davydow DS, Gifford JM, Desai SV, Bienvenu OJ, Needham DM. Depression in general intensive care unit survivors: a systematic review. Intensive Care Med. 2009;35(5):796–809.
Article
PubMed
Google Scholar
Wake S, Kitchiner D. Post-traumatic stress disorder after intensive care. BMJ. 2013;346:f3232.
Article
PubMed
Google Scholar
Gandhi GY, Murad MH, Fujiyoshi A, Mullan RJ, Flynn DN, Elamin MB, et al. Patient-important outcomes in registered diabetes trials. JAMA. 2008;299(21):2543–9.
Article
CAS
PubMed
Google Scholar
Moher D, Shamseer L, Clarke M, Ghersi D, Liberati A, Petticrew M, et al. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Syst Rev. 2015;4:1.
Article
PubMed
PubMed Central
Google Scholar
Boers M, Brooks P, Simon LS, Strand V, Tugwell P. OMERACT: an international initiative to improve outcome measurement in rheumatology. Clin Exp Rheumatol. 2005;23(5 Suppl 39):S10–3.
CAS
PubMed
Google Scholar
Higgins JP, Green S. Cochrane handbook for systematic reviews of interventions. London: The Cochrane Collaboration; 2008.
Book
Google Scholar
Altman DG. Practical statistics for medical research. 1st ed. London: Chapman and Hall; 1991. p. 611.
Google Scholar
Needham DM, Dinglas VD, Bienvenu OJ, Colantuoni E, Wozniak AW, Rice TW, et al. One year outcomes in patients with acute lung injury randomised to initial trophic or full enteral feeding: prospective follow-up of EDEN randomised trial. BMJ. 2013;346:f1532.
Article
PubMed
PubMed Central
Google Scholar
Herridge MS, Cheung AM, Tansey CM, Matte-Martyn A, Diaz-Granados N, Al-Saidi F, et al. One-year outcomes in survivors of the acute respiratory distress syndrome. N Engl J Med. 2003;348(8):683–93.
Article
PubMed
Google Scholar
Herridge MS, Tansey CM, Matté A, Tomlinson G, Diaz-Granados N, Cooper A, et al. Functional disability 5 years after acute respiratory distress syndrome. N Engl J Med. 2011;364(14):1293–304.
Article
CAS
PubMed
Google Scholar
Davydow DS, Gifford JM, Desai SV, Needham DM, Bienvenu OJ. Posttraumatic stress disorder in general intensive care unit survivors: a systematic review. Gen Hosp Psychiatr. 2008;30(5):421–34.
Article
Google Scholar
Bienvenu OJ, Colantuoni E, Mendez-Tellez PA, Dinglas VD, Shanholtz C, Husain N, et al. Depressive symptoms and impaired physical function after acute lung injury: a 2-year longitudinal study. Am J Respir Crit Care Med. 2012;185(5):517–24.
Article
PubMed
PubMed Central
Google Scholar
Hopkins RO, Weaver LK, Collingridge D, Parkinson RB, Chan KJ, Orme JF. Two-year cognitive, emotional, and quality-of-life outcomes in acute respiratory distress syndrome. Am J Respir Crit Care Med. 2005;171(4):340–7.
Article
PubMed
Google Scholar
Mikkelsen ME, Christie JD, Lanken PN, Biester RC, Thompson BT, Bellamy SL, et al. The adult respiratory distress syndrome cognitive outcomes study: long-term neuropsychological function in survivors of acute lung injury. Am J Respir Crit Care Med. 2012;185(12):1307–15.
Article
PubMed
PubMed Central
Google Scholar
Iwashyna TJ, Ely EW, Smith DM, Langa KM. Long-term cognitive impairment and functional disability among survivors of severe sepsis. JAMA. 2010;304(16):1787–94.
Article
CAS
PubMed
PubMed Central
Google Scholar
Elliott D, Davidson JE, Harvey MA, Bemis-Dougherty A, Hopkins RO, Iwashyna TJ, 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.
Article
PubMed
Google Scholar
Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care. 2007;45(5 Suppl 1):S3–11.
Article
PubMed
PubMed Central
Google Scholar
Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, et al. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13:132.
Article
PubMed
PubMed Central
Google Scholar
Prinsen CAC, Vohra S, Rose MR, King-Jones S, Ishaque S, Bhaloo Z, et al. Core Outcome Measures in Effectiveness Trials (COMET) initiative: protocol for an international Delphi study to achieve consensus on how to select outcome measurement instruments for outcomes included in a “core outcome set”. Trials. 2014;15:247.
Article
PubMed
PubMed Central
Google Scholar
Blackwood B, Ringrow S, Clarke M, Marshall J, Rose L, Williamson P, et al. Core Outcomes in Ventilation Trials (COVenT): protocol for a core outcome set using a Delphi survey with a nested randomised trial and observational cohort study. Trials. 2015;16:368.
Article
PubMed
PubMed Central
Google Scholar
Giraudeau B, Caille A, Le Gouge A, Ravaud P. Participant informed consent in cluster randomized trials: review. PLoS ONE. 2012;7(7):e40436.
Article
CAS
PubMed
PubMed Central
Google Scholar
Baron G, Perrodeau E, Boutron I, Ravaud P. Reporting of analyses from randomized controlled trials with multiple arms: a systematic review. BMC Med. 2013;11:84.
Article
PubMed
PubMed Central
Google Scholar
Tugwell PS, Maxwell LJ, Beaton DE, Busse JW, Christensen R, Conaghan PG, et al. Deliberative dialogue on developing consensus on measurement and presentation of patient important outcomes in systematic reviews: a preconference meeting at OMERACT 12. J Rheumatol. 2015;42(10):1931–3.
Article
Google Scholar
Redline S, Baker-Goodwin S, Bakker JP, Epstein M, Hanes S, Hanson M, et al. Patient partnerships transforming sleep medicine research and clinical care: perspectives from the sleep apnea patient-centered outcomes network. JCSM. 2016;12(7):1053–8.
Article
PubMed
PubMed Central
Google Scholar
Morgans AK, van Bommel ACM, Stowell C, Abrahm JL, Basch E, Bekelman JE, et al. Development of a standardized set of patient-centered outcomes for advanced prostate cancer: an international effort for a unified approach. Eur Urol. 2015;68(5):891–8.
Article
PubMed
Google Scholar
Murad MH, Shah ND, Van Houten HK, Ziegenfuss JY, Deming JR, Beebe TJ, et al. Individuals with diabetes preferred that future trials use patient-important outcomes and provide pragmatic inferences. J Clin Epidemiol. 2011;64(7):743–8.
Article
PubMed
Google Scholar
Young K. Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. BMJ. 2013;346:f2901.
Article
PubMed
Google Scholar
Petit-Zeman S, Firkins L, Scadding JW. The James Lind Alliance: tackling research mismatches. Lancet Lond Engl. 2010;376(9742):667–9.
Article
Google Scholar
Partridge N, Scadding J. The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trials. Lancet Lond Engl. 2004;364(9449):1923–4.
Article
Google Scholar
Selby JV, Beal AC, Frank L. The Patient-Centered Outcomes Research Institute (PCORI) national priorities for research and initial research agenda. JAMA. 2012;307(15):1583–4.
Article
CAS
PubMed
Google Scholar
Frank L, Basch E, Selby JV. Patient-Centered Outcomes Research Institute. The PCORI perspective on patient-centered outcomes research. JAMA. 2014;312(15):1513–4.
Article
CAS
PubMed
Google Scholar
Frank L, Forsythe L, Ellis L, Schrandt S, Sheridan S, Gerson J, et al. Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Qual Life Res Int J Qual Life Asp Treat Care Rehabil. 2015;24(5):1033–41.
Article
Google Scholar
Newhouse R, Barksdale DJ, Miller JA. The patient-centered outcomes research institute: research done differently. Nurs Res. 2015;64(1):72–7.
Article
PubMed
Google Scholar
Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ. 2013;346:f2614.
Article
PubMed
Google Scholar
Echt DS, Liebson PR, Mitchell LB, Peters RW, Obias-Manno D, Barker AH, et al. Mortality and morbidity in patients receiving encainide, flecainide, or placebo. The Cardiac Arrhythmia Suppression Trial. N Engl J Med. 1991;324(12):781–8.
Article
CAS
PubMed
Google Scholar
Hébert PC, Wells G, Blajchman MA, Marshall J, Martin C, Pagliarello G, et al. A multicenter, randomized, controlled clinical trial of transfusion requirements in critical care. Transfusion Requirements in Critical Care Investigators, Canadian Critical Care Trials Group. N Engl J Med. 1999;340(6):409–17.
Article
PubMed
Google Scholar
Takala J, Ruokonen E, Webster NR, Nielsen MS, Zandstra DF, Vundelinckx G, et al. Increased mortality associated with growth hormone treatment in critically ill adults. N Engl J Med. 1999;341(11):785–92.
Article
CAS
PubMed
Google Scholar
Angus DC, Mira J-P, Vincent J-L. Improving clinical trials in the critically ill. Crit Care Med. 2010;38(2):527–32.
Article
PubMed
Google Scholar
Clermont G, Angus DC, Linde-Zwirble WT, Griffin MF, Fine MJ, Pinsky MR. Does acute organ dysfunction predict patient-centered outcomes? Chest. 2002;121(6):1963–71.
Article
PubMed
Google Scholar
Dettling-Ihnenfeldt DS, De Graaff AE, Nollet F, Van Der Schaaf M. Feasibility of Post-Intensive Care Unit Clinics: an observational cohort study of two different approaches. Min Anestesiol. 2015;81(8):865–75.
CAS
Google Scholar
Tian ZM, Miranda DR. Quality of life after intensive care with the sickness impact profile. Intensive Care Med. 1995;21(5):422–8.
Article
CAS
PubMed
Google Scholar
Ospina-Tascón GA, Büchele GL, Vincent J-L. Multicenter, randomized, controlled trials evaluating mortality in intensive care: doomed to fail? Crit Care Med. 2008;36(4):1311–22.
Article
PubMed
Google Scholar
Aberegg SK, Richards DR, O’Brien JM. Delta inflation: a bias in the design of randomized controlled trials in critical care medicine. Crit Care Lond Engl. 2010;14(2):R77.
Article
Google Scholar