In the critical care setting, usually the most important outcome is survival. However, this is not the only important outcome of critical care. There are increasing data that the patient's quality of life and functional status can be affected long after an intensive care unit stay, and some data suggest that mechanical ventilation strategies could influence those outcomes. Critical care clinicians' de- cisions regarding mechanical ventilation and related treatments such as level of sedation might have more profound and far-reaching residual effects than has been previously recognized. To deliver effective, cost-effective, and patient-centered care, critical-care clinicians must consider outcomes other than survival. These outcomes include such diverse concepts as quality of life, functional status, and neuropsychological function. This review addresses theoretical and practical challenges to measuring and interpreting those other outcomes.
DavidsonTA, CaldwellES, CurtisJR, HudsonLD, SteinbergKP. Reduced quality of life in survivors of acute respiratory distress syndrome compared to critically ill controls. JAMA1999;281(4):354–360.
2.
QuartinAA, ScheinRM, KettDH, PeduzziPN. Magnitude and duration of the effect of sepsis on survival. Department of Veterans Affairs Systemic Sepsis Cooperative Studies Group. JAMA1997;277(13):1058–1063.
3.
RanieriVM, SuterPM, TortorellaC, De TullioR, DayerJM, BrienzaA, et al. Effect of mechanical ventilation on inflammatory mediators in patients with acute respiratory distress syndrome: a randomized controlled trial. JAMA1999;282(1):54–61.
4.
Dos SantosCC, SlutskyAS. Invited review: mechanisms of venti- lator-induced lung injury: a perspective. J Appl Physiol2000;89(4):1645–1655.
5.
The Acute Respiratory Distress Syndrome Network. Ventilation with lower tidal volumes as compared with traditional tidal volumes for acute lung injury and the acute respiratory distress syndrome. N Engl J Med2000;342(18):1301–1308.
6.
HopkinsRO, WeaverLK, PopeD, OrmeJ, BiglerED, Larson-LohrV.Neuropsychological sequelae and impaired health status in sur- vivors of severe acute respiratory distress syndrome. Am J Respir Crit Care Med1999;160(1):50–56.
7.
SchellingG, StollC, HallarM, BriegelJ, ManertW, HummelT, et al. Health-related quality of life and posttraumatic stress disorder in survivors of acute respiratory distress syndrome. Crit Care Med1998;26(4):651–659.
8.
SchellingG, StollC, KapfhammerHP, RothenhauslerHB, KrauseneckT, DurstK, et al. The effect of stress doses of hydrocortisone during septic shock on posttraumatic stress disorder and health-re- lated quality of life in survivors. Crit Care Med1999;27(12):2678–2683.
9.
SchellingG, StollC, VogelmeierC, HummelT, BehrJ, Kapfham- merHP, et al. Pulmonary function and health-related quality of life in a sample of long-term survivors of the acute respiratory distress syndrome. Intensive Care Medicine2000;26(9):1304–1311.
10.
LaineC, DavidoffF.Patient-centered medicine: a professional evo- lution. JAMA1996;275(2):152–156.
11.
FowlerFJ, ClearyPD, MagazinerJ, PatrickDL, BenjaminKL. Methodological issues in measuring patient-reported outcomes. The agenda of the Work Group on Outcomes Assessment. Med Care1994;32 (7 Suppl):JS65–JS76.
12.
DeyoRA. The quality of life, research, and care. Ann Intern Med1991;114(8):695–697.
13.
HeylandDK, GuyattG, CookDJ, MeadeM, JuniperE, CroninL, GafniA.Frequency and methodologic rigor of quality of life assess- ments in the critical care literature. Crit Care Med1998;26(3):591–598.
14.
PrendergastTJ, LuceJM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med1997;155(1):15–20.
15.
CurtisJR, BennettCL, HornerRD, RubenfeldGD, DeHovitzJA, WeinsteinRA. Variations in intensive care unit utilization for pa- tients with human immunodeficiency virus-related Pneumocystis ca- rinii pneumonia: importance of hospital characteristics and geographic location. Crit Care Med1998;26(4):668–675.
16.
PritchardR, TenoJ, FisherE, The SUPPORT Investigators. Re- gional variation in the place of death (abstract). J Gen Intern Med1994;9:146A.
17.
BachPB, CarsonSS, LeffA.Outcomes and resource utilization for patients with prolonged critical illness managed by university of community-based subspecialists. Am J Respir Crit Care Med1998;158(5 Pt 1):1410–1415.
18.
ScheinhornDJ, ChaoDC, Stearn-HassenpflugM, LaBreeLD, HeltsleyDJ. Post-ICU mechanical ventilation: treatment of 1,123 patients at a regional weaning center. Chest1997;111(6):1654–1659.
19.
MeduriGU, BelenchiaJM, EstesRJ, WunderinkRG, el TorkyM, LeeperKV. Fibropoliferative phase of ARDS: clinical findings and effects of corticosteroids. Chest1991;100(4):943–952.
20.
KnausWA, HarrellFE, FisherCJ, WagnerDP, OpalSM, SadoffJC, et al. The clinical evaluation of new drugs for sepsis. A prospective study design based on survival analysis. JAMA1993;270(10):1233–1241.
21.
BoneRC, FisherCJ, ClemmerTP, SlotmanGJ, MetzCA, BalkRA. A controlled clinical trial of high dose methylprednisolone in the treatment of severe sepsis and septic shock. N Engl J Med1987;317(11):653–658.
22.
SasseKC, NauenbergE, LongA, AntonB, TuckerHJ. Long-term survival after intensive care unit admission with sepsis. Crit Care Med1995;23(8):1040–1047.
23.
DavidsonTA, RubenfeldG, CaldwellES, HudsonLD, SteinbergKP. The effect ot acute respiratory distress syndrome on long-term survival. Am J Respir Crit Care Med1999;160(13):1838–1842.
24.
McHughLG, MilbergJA, WhitcombME, SchoeneRB, MaunderRJ, HudsonLD. Recovery of function in survivors of the acute respiratory distress syndrome. Am J Respir Crit Care Med1994;150(1):90–94.
25.
GoodmanRB, SteinbergKP, CaldwellES, et al. Cytokines and functional outcomes in ARDS survivors (abstract). Am J Respir Crit Care Med2000;159:A718.
26.
CurtisJR, MartinDP, MartinTR. Patient-assessed health outcomes in chronic lung disease: what are they, how do they help us, and where do we go from here?Am J Respir Crit Care Med1997;156(4 Pt 1):1032–1039.
27.
FeinsteinAR. Clinical biostatistics: hard science, soft data, and the challenges of choosing clinical variables in research. Clin Pharmacol Ther1977;22(4):485–498.
28.
PatrickDL, DanisML, SoutherlandLI, HongG.Quality of life following intensive care. J Gen Intern Med1988;3(3):218–223.
29.
DanisM, PatrickDL, SoutherlandLI, GreenML. Patients' and families' preferences for medical intensive care. JAMA1988;260(6):797–802.
30.
YauE, RohatinerAZS, ListerTA, HindsCJ. Long term prognosis and quality of life following intensive care for life-threatening com- plications of haematological malignancy. Br J Cancer1991;64(6):938–942.
31.
ThiagarajanJ, TaylorP, HogbinE, RidleyS.Quality of life after multiple trauma requiring intensive care. Anaesthesia1994;49(3):211–218.
32.
SageWM, RosenthalMH, SilvermanJF. Is intensive care worth it? An assessment of input and outcome for the critically ill. Crit Care Med1986;14(9):777–782.
33.
MirandaDR. Quality of life after cardiopulmonary resuscitation. Chest1994;106(2):524–530.
34.
AngusDC, MusthafaAA, ClermontG, GriffinMF, Linde-ZwirbleWT, DremsizovTT, PinskyMR. Quality-adjusted survival in the first year after the acute respiratory distress syndrome. Am J Respir Crit Care Med2001;163(6):1389–1394.
35.
PerlTM, DvorakL, HwangT, WenzelRP. Long-term survival and function after suspected gram-negative sepsis. JAMA1995;274(4):338–345.
36.
NelsonBJ, WeinertCR, BuryCL, MarinelliWA, GrossCR. Inten- sive care unit drug use and subsequent quality of life in acute lung injury patients. Crit Care Med2000;28(11):3626–3630.
37.
ChelluriL, PinskyMR, DonahoeMP, GrenvikA.Long-term out- come of critically ill elderly patients requiring intensive care. JAMA1993;269(24):3119–3123.
38.
SchellingG, StollC, HallerM, BriegelJ, ManertW, HummelT, et al. Health-related quality of life and posttraumatic stress disorder in survivors of the acute respiratory distress syndrome. Crit Care Med1998;26(4):651–659.
39.
StollC, KapfhammerHP, RothenHauslerHB, HallerM, BriegelJ, SchmidtM, et al. Sensitivity and specificity of a screening test to document traumatic experiences and to diagnose post-traumatic stress disorder in ARDS patients after intensive care treatment. Intensive Care Med1999;25(7):697–704.
40.
Scientific Advisory Committee of the Medical Outcomes Trust. In- strument review criteria. Medical Outcomes Trust Bulletin1995;3:1–4.
41.
BlackNA, JenkinsonC, HayesJA, YoungD, VellaK, RowanKM, et al. Review of outcome measures used in adult critical care. Crit Care Med2001;29(11):2119–2124.
42.
PatrickDL, EricksonP.Health status and health policy: quality of life in health care evaluation and resource allocation. New York: Oxford University Press; 1993:478.
43.
WilsonIB, ClearyPD. Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. JAMA1995;273(1):59–65.
44.
PatrickDL, ChiangYP. Measurement of health outcomes in treat- ment effectiveness evaluations: conceptual and methodological chal- lenges. Med Care2000;38(9 Suppl):I114–II25.
45.
StewartAL, GreenfieldS, HaysRD, WellsK, RogersWH, BerrySD, et al. Functional status and well-being of patients with chronic conditions: results from the medical outcomes study. JAMA1989;262(7):907–913.
46.
BergnerM, BobbittRA, CarterWB, GilsonBS. The Sickness Im- pact Profile: development and final revision of a health status mea- sure. Med Care1981;19(8):787–805.
47.
JuniperEF, GuyattGH, EpsteinRS, FerriePJ, JaeschkeR, HillerTK. Evaluation of impairment of health-related quality of life in asthma: development of a questionnaire for use in clinical trials. Thorax1992;47(2):76–83.
48.
GuyattG, TownsendM, BermanL, PugsleyS.Quality of life in patients with chronic airflow limitation. Br J Dis Chest1987;81(1):45–54.
49.
JonesPW, QuirkFH, BaveystockCM, LittlejohnsP.A self-com- plete measure of health status for chronic airflow limitation: the St. George's Respiratory Questionnaire. Am Rev Respir Dis1992;145(6):1321–1327.
50.
DetskyAS, NaglieIG. A clinician's guide to cost-effectiveness anal- ysis. Ann Intern Med1990;113(2):147–154.
51.
RussellLB, GoldMR, SiegelJE, DanielsN, WeinsteinMC, for the Panel on Cost-Effectiveness in Health and Medicine. The role of cost-effectiveness analysis in health and medicine. JAMA1996;276(14):1172–1177.
52.
Understanding costs and cost-effectiveness in critical care. Re- port from the Second American Thoracic Society Workshop on Outcomes Research. Am J Respir Crit Care Med2002;165(4):540–550.
53.
Vazquez MataG, Rivera FernandezR, Gonzalez CarmonaA, et al. Factors related to quality of life 12 months after discharge from an intensive care unit. Crit Care Med1992;20(9):1257–1262.
54.
MundtDJ, GageRW, LemeshowS, PastidesH, TeresD, AvruninJS. Intensive care unit patient follow up: mortality, functional status, and return to work at six months. Arch Intern Med1989;149(1):68–72.
55.
SprangersMA, AaronsonNK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol1992;45(7):743–760.
56.
HintonJ.How reliable are relatives' retrospective reports of terminal illness? Patients' and relatives' accounts compared. Soc Sci Med1996;43(8):1229–1236.
57.
WeinertCR, GrossCR, KangasJR, BuryCL, MarinelliWA. Health- related quality of life after acute lung injury. Am J Respir Crit Care Med1997;156(4 Pt 1):1120–1128.
58.
HeylandDK, HopmanW, CooH, TranmarJ, McCollMA. Long- term health-related quality of life in survivors of sepsis. Crit Care Med2000;28(11):3599–3605.
59.
PettilaV, KaarlolaA, MakelainenA.Health-related quality of life of multiple organ dysfunction patients one year after intensive care. Intensive Care Med2000;26(10):1473–1479.
60.
ChelluriL, GrenvikA, SilvermanM.Intensive care for critically ill elderly: mortality, costs, quality of life: review of the literature. Arch Intern Med1995;155(10):1013–1022.
61.
MontuclardL, Garrouste-OrgeasM, TimsitJ, MissetB, De JongheB, CarletJ.Outcome, functional autonomy, and quality of life of elderly patients with a long term intensive care unit stay. Crit Care Med2000;28(10):3389–3395.
62.
WelshCH, ThompsonK, Long-KrugS.Evaluation of patient-per- ceived health status using the Medical Outcomes Survey Short Form 36 in an intensive care unit population. Crit Care Med1999;27(8):1466–1471.
63.
WehlerM, MartusP, GeiseA, BostF, MuellerA, HahnEG, StraussR.Changes in quality of life after medical intensive care. Intensive Care Med2001;27(1):154–159.
64.
KonopadE, NoseworthyTW, JohnstonR, ShustackA, GraceM.Quality of life measures before and one year after admission to an intensive care unit. Crit Care Med1995;23(10):1653–1659.
65.
NelsonJE, MeierD, OeiEJ, NiemanDM, SenzelRS, ManfrediPL, et al. Self-reported symptom experience of critically ill cancer pa- tients receiving intensive care. Crit Care Med2001;29(2):277–282.
66.
PuntilloKA. Pain experience of intensive care unit patients. Heart Lung1990;19():525–533.
67.
The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUP- PORT). JAMA1995;274(20):1591–1598.
68.
RothenHauslerHB, EhrentrautS, StollC, SchellingG, KapfhammerHP. The relationship between cognitive performance and employ- ment and health status in long-term survivors of the acute respiratory distress syndrome: results of an exploratory study. Gen Hosp Psy- chiatry2001;23(2):90–96.
69.
FoleyKM. Competent care for the dying instead of physician- as-sisted suicide. N Engl J Med1997;336(1):54–58.
70.
MeierDE, MorrisonRS, CasselCK. Improving palliative care. Ann Intern Med1997;127(3):225–230.
71.
RubenfeldGD, CurtisJR, for the End-of-Life Care in the ICU Work- ing Group. End-of-life care in the intensive care: a research agenda. Crit Care Med2001;29(10):2001–2006.
72.
LevyMM. Paying attention to death. Crit Care Med2001;29(10):2037–2038.
73.
DesbiensNA, WuAW. Pain and suffering in seriously ill hospital- ized patients. J Am Geriatr Soc2000;48(5 Suppl):S183–S186.
74.
CurtisJR, PatrickDL, EngelbergRA, NorrisKE, AspCH, ByockIR. A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manage2002, (in press).
75.
CherDJ, LenertLA. Method of Medicare reimbursement and the rate of potentially ineffective care of critically ill patients. JAMA1997;278(12):1001–1007.
76.
CurtisJR, RubenfeldGD. Aggressive medical care at the end of life: does capitated reimbursement encourage the right care for the wrong reason? (editorial)JAMA1997;278(12):1025–1026.
77.
TulskyJA, CassilethBR, BennettCL. The effect of ethnicity on ICU use and DNR orders in hospitalized AIDS patients. J Clin Ethics1997;8(2):150–157.
78.
CurtisJR, PatrickDL, ShannonSE, TreecePD, EngelbergRA, RubenfeldGD. The family conference as a focus to improve com- munication about end-of-life care in the intensive care unit: oppor- tunities for improvement. CritCare Med2001;29(2 Suppl):N26–N33.
