A growing number of intensive care unit (ICU) survivors experience persistent physical, cognitive, or mental health symptoms or impairments post-ICU discharge, collectively known as post-intensive care syndrome (PICS). Characterizing post-ICU symptom experiences is essential for understanding PICS from a patient-centered perspective and for designing effective interventions to improve long-term health outcomes. However, there is limited collation of existing literature on this topic. This scoping review aimed to map, collate, and synthesize existing knowledge about PICS symptom experiences (types and dimensions) in adult ICU survivors, including co-occurring symptoms, symptom relationships, and symptom clusters (co-occurring and related symptoms).
Methods
We conducted a systematic search of PubMed, CINAHL, PsycINFO, and SCOPUS for studies published in English that collected data between January 2020 and December 2023. Eligible studies were conducted in the United States, included adult (≥18 years) ICU survivors, and described two or more subjective, self-reported symptoms within one year of ICU discharge.
Results
Of 1278 articles screened, 13 studies met the inclusion criteria. Mental health symptoms, such as depression and anxiety, were the most commonly reported, appearing in 11 and 9 studies, respectively. Nine studies reported symptom prevalence, eight reported symptom intensity, and none reported symptom frequency, distress, or meaning. Among 13 studies reporting co-occurring symptoms, two studies reported symptom relationships, with one suggesting potential symptom clusters.
Conclusion
Significant gaps remain in the literature regarding a comprehensive, patient-centered understanding of PICS symptom experiences. Future research should address symptom frequency, distress, meaning, as well as symptom relationships and clusters, to inform effective post-discharge symptom management interventions for ICU survivors.
CochiSEKempkerJAAnnangiSKramerMRMartinGS.Mortality trends of acute respiratory distress syndrome in the United States from 1999 to 2013. Ann Am Thorac Soc2016;13(10):1742-1751. (In eng). DOI: 10.1513/AnnalsATS.201512-841OC.
2.
MácaJJorOHolubM, et al.Past and present ARDS mortality rates: A systematic review. Respir Care.2017;62(1):113-122. DOI: 10.4187/respcare.04716
3.
HillADFowlerRAPintoRHerridgeMSCuthbertsonBHScalesDC. Long-term outcomes and healthcare utilization following critical illness – a population-based study. Crit Care.2016;20(1):76. DOI: 10.1186/s13054-016-1248-y
4.
NeedhamDMDavidsonJCohenH, et al.Improving long-term outcomes after discharge from intensive care unit: Report from a stakeholders’ conference. Crit Care Med.2012;40(2):502-509. (In eng). DOI: 10.1097/CCM.0b013e318232da75.
5.
OhtakePJLeeACScottJC, et al.Physical impairments associated with post–intensive care syndrome: Systematic review based on the world health organization's international classification of functioning, disability and health framework. Phys Ther.2018;98(8):631-645. DOI: 10.1093/ptj/pzy059
6.
FanEDowdyDWColantuoniE, et al.Physical complications in acute lung injury survivors: A two-year longitudinal prospective study. Crit Care Med.2014;42(4):849-859. (In eng). DOI: 10.1097/ccm.0000000000000040.
7.
PatonMLe MaitreCBerkovicDLaneRHodgsonCL. The impact of critical illness on patients’ physical function and recovery: An explanatory mixed-methods analysis. Intensive and Critical Care Nursing. 2024;81:103583. DOI: 10.1016/j.iccn.2023.103583
8.
PandharipandePPGirardTDJacksonJC, et al.Long-term cognitive impairment after critical illness. N Engl J Med.2013;369(14):1306-1316. DOI: 10.1056/NEJMoa1301372
9.
RengelKFHayhurstCJPandharipandePPHughesCG.Long-term cognitive and functional impairments after critical illness. Anesth Analg.2019;128(4):772-780. (In eng). DOI: 10.1213/ane.0000000000004066.
10.
RousseauAFColsonCMinguetP, et al.Characteristics of mid-term post-intensive care syndrome in patients attending a follow-up clinic: A prospective comparison between COVID-19 and non-COVID-19 survivors. Critical Care Explorations. 2023;5(1):e0850. DOI: 10.1097/cce.0000000000000850
11.
HatchRYoungDBarberVGriffithsJHarrisonDAWatkinsonP. Anxiety, depression and post traumatic stress disorder after critical illness: A UK-wide prospective cohort study. Crit Care.2018;22(1):310. (In eng). DOI: 10.1186/s13054-018-2223-6.
12.
Williams RobersonSNwosuSCollarEM, et al.Association of vitamin C, thiamine, and hydrocortisone infusion with long-term cognitive, psychological, and functional outcomes in sepsis survivors: A secondary analysis of the vitamin C, thiamine, and steroids in sepsis randomized clinical trial. JAMA Network Open. 2023;6(2):e230380-e230380. DOI: 10.1001/jamanetworkopen.2023.0380
13.
JacksonJCPandharipandePPGirardTD, et al.Depression, post-traumatic stress disorder, and functional disability in survivors of critical illness in the BRAIN-ICU study: A longitudinal cohort study. Lancet Respir Med.2014;2(5):369-379. DOI: 10.1016/S2213-2600(14)70051-7
14.
HayhurstCJJacksonJCArcherKRThompsonJLChandrasekharRHughesCG.Pain and its long-term interference of daily life after critical illness. Anesth Analg.2018;127(3):690-697. (In eng). DOI: 10.1213/ane.0000000000003358.
15.
BenchSStaytLShahADhimanPCzuber-DochanW.Prevalence and experience of fatigue in survivors of critical illness: A mixed-methods systematic review. Anaesthesia2021;76(9):1233-1244. (In eng). DOI: 10.1111/anae.15441.
16.
BrückELarssonJWLasselinJ, et al.Lack of clinically relevant correlation between subjective and objective cognitive function in ICU survivors: A prospective 12-month follow-up study. Crit Care.2019;23(1):253. (In eng). DOI: 10.1186/s13054-019-2527-1.
17.
NikayinSRabieeAHashemMD, et al.Anxiety symptoms in survivors of critical illness: A systematic review and meta-analysis. Gen Hosp Psychiatry.2016;43:23-29. (In eng). DOI: 10.1016/j.genhosppsych.2016.08.005.
18.
DuZLiuXLiY, et al.Depressive symptoms over time among survivors after critical illness: A systematic review and meta-analysis. Gen Hosp Psychiatry.2024;87:41-47. (In eng). DOI: 10.1016/j.genhosppsych.2023.12.008.
19.
AltmanMTKnauertMPPisaniMA.Sleep disturbance after hospitalization and critical illness: A systematic review. Ann Am Thorac Soc.2017;14(9):1457-1468. (In eng). DOI: 10.1513/AnnalsATS.201702-148SR.
20.
MarraAPandharipandePPGirardTD, et al.Co-cccurrence of post-intensive care syndrome problems among 406 survivors of critical illness. Crit Care Med.2018;46(9):1393-1401. (In eng). DOI: 10.1097/ccm.0000000000003218.
YuanCTimminsFThompsonDR. Post-intensive care syndrome: A concept analysis. Int J Nurs Stud.2021;114:103814. DOI: 10.1016/j.ijnurstu.2020.103814
23.
MaleyJHBrewsterIMayoralI, et al.Resilience in survivors of critical illness in the context of the survivors’ experience and recovery. Ann Am Thorac Soc.2016;13(8):1351-1360. (In eng). DOI: 10.1513/AnnalsATS.201511-782OC.
24.
RabieeANikayinSHashemMD, et al.Depressive symptoms after critical illness: A systematic review and meta-analysis. Crit Care Med.2016;44(9):1744-1753. (In eng). DOI: 10.1097/ccm.0000000000001811.
25.
ArmstrongTS.Symptoms experience: A concept analysis. Oncol Nurs Forum.2003;30(4):601-606. (In eng). DOI: 10.1188/03.Onf.601-606.
26.
SzymczakHDodoo-SchittkoFBrandstetterS, et al.Trajectories of quality of life, return to work, psychopathology, and disability in survivors of the acute respiratory distress syndrome (ARDS): A three-year prospective cohort study (DACAPO). J Crit Care.2023;78:154356. DOI: 10.1016/j.jcrc.2023.154356
27.
GravanteFTrottaFLatinaS, et al.Quality of life in ICU survivors and their relatives with post-intensive care syndrome: A systematic review. Nurs Crit Care.2024;29:807-823. (In eng). DOI: 10.1111/nicc.13077.
28.
RuhlAPHuangMColantuoniE, et al.Healthcare utilization and costs in ARDS survivors: A 1-year longitudinal national US multicenter study. Intensive Care Med.2017;43(7):980-991. DOI: 10.1007/s00134-017-4827-8
29.
PaoliCJReynoldsMASinhaMGitlinMCrouserE. Epidemiology and costs of sepsis in the United States— An analysis based on timing of diagnosis and severity level. Crit Care Med.2018;46(12):1889-1897. DOI: 10.1097/CCM.0000000000003342
30.
BoucherPETaplinJClementF. The cost of ARDS: A systematic review. CHEST. 2022;161(3):684-696. DOI: 10.1016/j.chest.2021.08.057
31.
SmithJMLeeACZeleznikH, et al.Home and community-based physical therapist management of adults with post–intensive care syndrome. Phys Ther.2020;100(7):1062-1073. DOI: 10.1093/ptj/pzaa059
32.
DaneshVBoehmLMEatonTL, et al.Characteristics of post-ICU and post-COVID recovery clinics in 29 U.S. Health systems. Critical Care Explorations. 2022;4(3):e0658 . DOI: 10.1097/CCE.0000000000000658
33.
WunschHGuerraCBarnatoAEAngusDCLiGLinde-ZwirbleWT. Three-year outcomes for medicare beneficiaries who survive intensive care. JAMA. 2010;303(9):849-856. DOI: 10.1001/jama.2010.216
34.
JainSMurphyTEO'LearyJRLeo-SummersLFerranteLE.Association between socioeconomic disadvantage and decline in function, cognition, and mental health after critical illness among older adults : A cohort study. Ann Intern Med.2022;175(5):644-655. (In eng). DOI: 10.7326/m21-3086.
35.
KingJO'NeillBRamsayP, et al.Identifying patients’ support needs following critical illness: A scoping review of the qualitative literature. Crit Care.2019;23(1):187. (In eng). DOI: 10.1186/s13054-019-2441-6.
36.
CaddMNunnM.An A-E assessment of post-ICU COVID-19 recovery. J Intensive Care.2021;9(1):29. (In eng). DOI: 10.1186/s40560-021-00544-w.
37.
PetersMDJMarnieCTriccoAC, et al.Updated methodological guidance for the conduct of scoping reviews. JBI Evidence Synthesis2020;18(10):2119-2126. (In eng). DOI: 10.11124/jbies-20-00167.
38.
TriccoACLillieEZarinW, et al.PRISMA Extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med.2018;169(7):467-473. (In eng). DOI: 10.7326/m18-0850.
39.
EoYHawnRStevensJMPecanacKEKwekkeboomKL. Post-ICU symptom experiences in survivors of critical illness: a scoping review protocol.
40.
Van Der SchaafMBakhshi-RaiezFVan Der SteenMDongelmansDADe KeizerNF. Recommendations for intensive care follow-up clinics; report from a survey and conference of Dutch intensive cares. Minerva Anestesiol.2015;81(2):135-144. (In eng).
41.
MikkelsenMEStillMAndersonBJ, et al.Society of critical care medicine's international consensus conference on prediction and identification of long-term impairments after critical illness. Crit Care Med.2020;48(11):1670-1679. (In eng). DOI: 10.1097/ccm.0000000000004586.
42.
PrinMWunschH.International comparisons of intensive care: Informing outcomes and improving standards. Curr Opin Crit Care2012;18(6):700-706. (In eng). DOI: 10.1097/MCC.0b013e32835914d5.
43.
QuaileA. NICE QS158: Rehabilitation after critical illness in adults. Br J Card Nurs. 2018;13(10):476-477. doi:10.12968/bjca.2018.13.10.476
44.
VranceanuA-MBannonSMaceR, et al.Feasibility and efficacy of a resiliency intervention for the prevention of chronic emotional distress among survivor-caregiver dyads admitted to the neuroscience intensive care unit: A randomized clinical trial. JAMA Network Open. 2020;3(10):e2020807-e2020807. DOI: 10.1001/jamanetworkopen.2020.20807
45.
WeidmanKLaFondEHoffmanKL, et al.Post-Intensive care unit syndrome in a cohort of COVID-19 survivors in New York city. Ann Am Thorac Soc.2022;19(7):1158-1168. DOI: 10.1513/AnnalsATS.202104-520OC
46.
Bottom-TanzerSFPoyantJOLouzadaMT, et al.High occurrence of postintensive care syndrome identified in surgical ICU survivors after implementation of a multidisciplinary clinic. J Trauma Acute Care Surg.2021;91(2):406-412. DOI: 10.1097/ta.0000000000003231
47.
EatonTLScheunemannLPButcherBWDonovanHSAlexanderSIwashynaTJ. The prevalence of spiritual and social support needs and their association with postintensive care syndrome symptoms among critical illness survivors seen in a post-ICU follow-up clinic. Critical Care Explorations. 2022;4(4):e0676. DOI: 10.1097/cce.0000000000000676
48.
SturgillJLMayerKPKalemaAG, et al.Post-intensive care syndrome and pulmonary fibrosis in patients surviving ARDS-pneumonia of COVID-19 and non-COVID-19 etiologies. Sci Rep.2023;13(1):6554. DOI: 10.1038/s41598-023-32699-x
49.
ChandSKapoorSNaqviA, et al.Long-Term follow up of renal and other acute organ failure in survivors of critical illness due to COVID-19. J Intensive Care Med.2022;37(6):736-742. DOI: 10.1177/08850666211062582
50.
MaleyJHSandsmarkDKTrainorA, et al.Six-Month impairment in cognition, mental health, and physical function following COVID-19-associated respiratory failure. Critical Care Explorations. 2022;4(4):e0673. DOI: 10.1097/cce.0000000000000673
51.
MartilloMADangayachNSTabacofL, et al.Postintensive care syndrome in survivors of critical illness related to coronavirus disease 2019: Cohort study from a New York city critical care recovery clinic. Crit Care Med.2021;49(9):1427-1438. DOI: 10.1097/ccm.0000000000005014
52.
HeraudSOShahVPerez-GutierezV, et al.Post-Intensive care syndrome among survivors in a safety net hospital in south Bronx: A comparison of patients with and without coronavirus disease 2019. Open Forum Infect Dis.2023;10(1):ofac606. DOI: 10.1093/ofid/ofac606
53.
ProffittTMenziesVGrapMJOrrTThackerL2nd, AmeringerS. Cognitive impairment, physical impairment, and psychological symptoms in intensive care unit survivors. Am J Crit Care.2023;32(6):410-420. (In eng). DOI: 10.4037/ajcc2023946.
54.
DaneshVBoehmLMCuevasHArroligaACStevensAB. Peer-delivered motivational interviewing intervention for post-intensive care syndrome: A pilot of peer mentor training feasibility. Phys Med Rehabil J. 2023;15(6):805-807. DOI: 10.1002/pmrj.12879
55.
MayerKPOrtiz-SorianoVMKalantarALambertJMorrisPENeyraJA. Acute kidney injury contributes to worse physical and quality of life outcomes in survivors of critical illness. BMC Nephrol. 2022;23(1):137. DOI: 10.1186/s12882-022-02749-z
56.
BienvenuOJFriedmanLAColantuoniE, et al.Psychiatric symptoms after acute respiratory distress syndrome: A 5-year longitudinal study. Intensive Care Med.2018;44(1):38-47. DOI: 10.1007/s00134-017-5009-4
57.
NeedhamDMWozniakAWHoughCL, et al.Risk factors for physical impairment after acute lung injury in a national, multicenter study. Am J Respir Crit Care Med.2014;189(10):1214-1224. (In eng). DOI: 10.1164/rccm.201401-0158OC.
58.
EatonTLGerstenRAIwashynaTJ.It is feasible to relieve distressing symptoms after the ICU. Am J Respir Crit Care Med.2023;208(11):1151-1153. (In eng). DOI: 10.1164/rccm.202310-1768ED.
59.
SevinCMJacksonJC. Post-ICU clinics should be staffed by ICU clinicians. Crit Care Med.2019;47(2):268-272. DOI: 10.1097/CCM.0000000000003535
60.
RadloffLS. The CES-D scale: A self-report depression scale for research in the general population. Appl Psychol Meas.1977;1(3):385-401. DOI: 10.1177/014662167700100306
61.
PortenoyRKThalerHTKornblithAB, et al.The memorial symptom assessment scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer.1994;30a(9):1326-1336. (In eng). DOI: 10.1016/0959-8049(94)90182-1.
62.
CleelandCSMendozaTRWangXS, et al.Assessing symptom distress in cancer patients: The M.D. Anderson symptom inventory. Cancer2000;89(7):1634-1646. (In eng).
63.
MiaskowskiCBarsevickABergerA, et al.Advancing symptom science through symptom cluster research: Expert panel proceedings and recommendations. JNCI J Natl Can Inst. 2017;109(4):djw253. DOI: 10.1093/jnci/djw253
64.
DalmaijerESNordCLAstleDE. Statistical power for cluster analysis. BMC Bioinf. 2022;23(1):205. DOI: 10.1186/s12859-022-04675-1
65.
WilliamsBOnsmanABrownT. Exploratory factor analysis: A five-step guide for novices. Australas J Paramedicine. 2010;8:1-13. DOI: 10.33151/ajp.8.3.93
66.
JungS. Exploratory factor analysis with small sample sizes: A comparison of three approaches. Behav Processes. 2013;97:90-95. DOI: 10.1016/j.beproc.2012.11.016
67.
NasreddineZSPhillipsNABédirianV, et al.The Montreal cognitive assessment, MoCA: A brief screening tool for mild cognitive impairment. J Am Geriatr Soc.2005;53(4):695-699. 10.1111/j.1532-5415.2005.53221.x
68.
WoltersAESlooterAJCvan der KooiAWvan DijkD. Cognitive impairment after intensive care unit admission: A systematic review. Intensive Care Med.2013;39(3):376-386. DOI: 10.1007/s00134-012-2784-9
69.
Jesus PereiraISantosMSganzerlaD, et al.Long term cognitive dysfunction among critical care survivors: Associated factors and quality of life—a multicenter cohort study. Ann Intensive Care.2024;14(1):116. DOI: 10.1186/s13613-024-01335-w
70.
LorigKRHolmanHR. Self-management education: History, definition, outcomes, and mechanisms. Ann Behav Med.2003;26(1):1-7. DOI: 10.1207/s15324796abm2601_01
71.
Schulman-GreenDJaserSMartinF, et al.Processes of self-management in chronic illness. J Nurs Scholarsh.2012;44(2):136-144. (In eng). DOI: 10.1111/j.1547-5069.2012.01444.x.
72.
HusebøALMSøreideJAKørnerH, et al.Ehealth interventions to support colorectal cancer patients’ self-management after discharge from surgery—an integrative literature review. Support Care Cancer.2023;32(1):11. DOI: 10.1007/s00520-023-08191-7
73.
StenbergNGillisonFRodhamK. How do peer support interventions for the self-management of chronic pain, support basic psychological needs? A systematic review and framework synthesis using self-determination theory. Patient Educ Couns.2022;105(11):3225-3234. 10.1016/j.pec.2022.07.017
74.
Lopez-LeonSWegman-OstroskyTPerelmanC, et al.More than 50 long-term effects of COVID-19: A systematic review and meta-analysis. Sci Rep.2021;11(1):16144. DOI: 10.1038/s41598-021-95565-8
75.
YongSJLiuS. Proposed subtypes of post-COVID-19 syndrome (or long-COVID) and their respective potential therapies. Rev Med Virol.2021;32. DOI: 10.1002/rmv.2315
76.
RousseauAFMinguetPColsonC, et al.Post-intensive care syndrome after a critical COVID-19: Cohort study from a Belgian follow-up clinic. Ann Intensive Care2021;11(1):118. (In eng). DOI: 10.1186/s13613-021-00910-9.
77.
Fernández-GonzaloSNavarra-VenturaGGomàG, et al.Characterization of postintensive care syndrome in a prospective cohort of survivors of COVID-19 critical illness: A 12-month follow-up study. Can J Anesth/Journal canadien d'anesthésie. 2024;71(9):1282-1301. DOI: 10.1007/s12630-024-02811-4
78.
BoultonAJJordanHAdamsCEPolgarovaPMorrisACAroraN. Intensive care unit visiting and family communication during the COVID-19 pandemic: A UK survey. J Intensive Care Soc. 2022;23(3):293-296. DOI: 10.1177/17511437211007779
79.
SuttonLBellEEvery-PalmerSWeatherallMSkirrowP. Survivorship outcomes for critically ill patients in Australia and New Zealand: A scoping review. Aust Crit Care.2023;37:354-368. DOI: 10.1016/j.aucc.2023.07.008
80.
ChuYThompsonDREustace-CookJTimminsF. Instruments to measure post-intensive care syndrome: A scoping review. Nurs Crit Care.2023;28(4):484-498. DOI: 10.1111/nicc.12885
81.
PhillipsEKMonninCGregoraA, et al.A scoping review of incidence and assessment tools for post-intensive care syndrome following cardiac surgery. Intensive Crit Care Nurs. 2024;83:103718. DOI: 10.1016/j.iccn.2024.103718
82.
PantUVyasKMeghaniSParkTNorrisCMPapathanassoglouE. Screening tools for post–intensive care syndrome and post-traumatic symptoms in intensive care unit survivors: A scoping review. Aust Crit Care.2023;36(5):863-871. DOI: 10.1016/j.aucc.2022.09.007
