The traditional goal of intensive care has been to decrease short-term mortality. While worthy, this goal fails to address the issue of what it means to survive intensive care. Key questions include whether intensive care survivors have optimal long-term outcomes and whether ICU care decisions would change if we knew more about these outcomes. The 2002 Brussels Roundtable, "Surviving Intensive care", highlighted these issues, summarizing the available evidence on natural history and risk factors for critical illness and outlining future directions for care and research. Critical illness is associated with a wide array of serious and concerning long-term sequelae that interfere with optimal patient-centered outcomes. Although traditional short-term outcomes, such as hospital mortality, remain extremely important, they are not likely to be adequate surrogates for subsequent patient-centered outcomes. As such, it is important to focus specifically on how critical illness and intensive care affects a patient's and relatives' long-term health and well-being. There are a large number of potential pre-, intra-, and post-ICU factors that may improve or worsen these outcomes, and these factors are subjects for future research. In addition, future clinical trials of ICU therapies should include long-term follow-up of survival, quality of life, morbidity, functional status, and costs of care. Follow-up ought to be for at least six months. The SF-36 and EuroQOL EQ-5D are the best-suited instruments for measuring quality of life in multicenter critical care trials though further methodologic research and instrument design is encouraged. There are also opportunities today to improve care. Key to taking advantage of such opportunities is the need for a global awareness of critical illness as an entity that begins and ends outside the ICU 'box'. Specific interventions that show promise for improving care include ICU discharge screening tools and ICU follow-up clinics.

/pdf/surviving-intensive-care-a-report-from-the-2002-brussels-eysyclwy8f.pdf

Surviving Intensive Care: a report from the 2002 Brussels Roundtable

Objective: To determine how the quality of life (QOL) of intensive care unit (ICU) survivors compares with the general population, changes over time, and is predicted by baseline characteristics. Design: Systematic literature review including MEDLINE, EMBASE, CINAHL and Cochrane Library. Eligible studies measured QOL ≥30 days after ICU discharge using the Medical Outcomes Study 36-item Short Form (SF-36), EuroQol-5D, Sickness Impact Profile, or Nottingham Health Profile in representative populations of adult ICU survivors. Disease-specific studies were excluded. Measurements and results: Of 8,894 citations identified, 21 independent studies with 7,320 patients were reviewed. Three of three studies found that ICU survivors had significantly lower QOL prior to admission than did a matched general population. During post-discharge follow-up, ICU survivors had significantly lower QOL scores than the general population in each SF-36 domain (except bodily pain) in at least four of seven studies. Over 1–12 months of follow-up, at least two of four studies found clinically meaningful improvement in each SF-36 domain except mental health and general health perceptions. A majority of studies found that age and severity of illness predicted physical functioning. Conclusions: Compared with the general population, ICU survivors report lower QOL prior to ICU admission. After hospital discharge, QOL in ICU survivors improves but remains lower than general population levels. Age and severity of illness are predictors of physical functioning. This systematic review provides a general understanding of QOL following critical illness and can serve as a standard of comparison for QOL studies in specific ICU subpopulations

/pdf/quality-of-life-in-adult-survivors-of-critical-illness-a-3ghtar4zy5.pdf

Quality of life in adult survivors of critical illness: A systematic review of the literature

Purpose
This study was designed to identify factors associated with death by 6 months post-intensive care unit (ICU) discharge and to develop a practical mortality risk score for extracorporeal membrane oxygenation (ECMO)-treated acute respiratory distress syndrome (ARDS) patients. We also assessed long-term survivors’ health-related quality of life (HRQL), respiratory symptoms, and anxiety, depression and post-traumatic stress disorder (PTSD) frequencies.

/pdf/the-preserve-mortality-risk-score-and-analysis-of-long-term-2sqqdq3aoi.pdf

The PRESERVE mortality risk score and analysis of long-term outcomes after extracorporeal membrane oxygenation for severe acute respiratory distress syndrome

Objectives To test the hypothesis that nurse led follow-up programmes are effective and cost effective in improving quality of life after discharge from intensive care. Design A pragmatic, non-blinded, multicentre, randomised controlled trial. Setting Three UK hospitals (two teaching hospitals and one district general hospital). Participants 286 patients aged ≥18 years were recruited after discharge from intensive care between September 2006 and October 2007. Intervention Nurse led intensive care follow-up programmes versus standard care. Main outcome measure(s) Health related quality of life (measured with the SF-36 questionnaire) at 12 months after randomisation. A cost effectiveness analysis was also performed. Results 286 patients were recruited and 192 completed one year follow-up. At 12 months, there was no evidence of a difference in the SF-36 physical component score (mean 42.0 (SD 10.6) v 40.8 (SD 11.9), effect size 1.1 (95% CI −1.9 to 4.2), P=0.46) or the SF-36 mental component score (effect size 0.4 (−3.0 to 3.7), P=0.83). There were no statistically significant differences in secondary outcomes or subgroup analyses. Follow-up programmes were significantly more costly than standard care and are unlikely to be considered cost effective. Conclusions A nurse led intensive care follow-up programme showed no evidence of being effective or cost effective in improving patients’ quality of life in the year after discharge from intensive care. Further work should focus on the roles of early physical rehabilitation, delirium, cognitive dysfunction, and relatives in recovery from critical illness. Intensive care units should review their follow-up programmes in light of these results. Trial registration ISRCTN 24294750

https://www.bmj.com/content/bmj/339/bmj.b3723.full.pdf

The PRaCTICaL study of nurse led, intensive care follow-up programmes for improving long term outcomes from critical illness: a pragmatic randomised controlled trial

Purpose
To critically review data on the prevalence of depressive symptoms in general intensive care unit (ICU) survivors, risk factors for these symptoms, and their impact on health-related quality of life (HRQOL).

https://link.springer.com/content/pdf/10.1007%2Fs00134-009-1396-5.pdf

Depression in general intensive care unit survivors: a systematic review.

ObjectiveTo assess survival, morbidity (physical and psychological), quality of life (QOL), and employment status of intensive care survivors up to 12 months after discharge from the intensive care unit (ICU).DesignProspective study.SettingUniversity hospital adult ICU.PatientsBetween August 1, 1995

Else Guthrie

Papers

Survival, morbidity, and quality of life after discharge from intensive care.