Patient outcomes after critical illness: a systematic review of qualitative studies following hospital discharge

Mohamed D Hashem, Aparna Nallagangula, Swaroopa Nalamalapu, Krishidhar Nunna, Utkarsh Nausran, Karen A Robinson, Victor D Dinglas, Dale M Needham, Michelle N Eakin, Mohamed D Hashem, Aparna Nallagangula, Swaroopa Nalamalapu, Krishidhar Nunna, Utkarsh Nausran, Karen A Robinson, Victor D Dinglas, Dale M Needham, Michelle N Eakin

Abstract

Background: There is growing interest in patient outcomes following critical illness, with an increasing number and different types of studies conducted, and a need for synthesis of existing findings to help inform the field. For this purpose we conducted a systematic review of qualitative studies evaluating patient outcomes after hospital discharge for survivors of critical illness.

Methods: We searched the PubMed, EMBASE, CINAHL, PsycINFO, and CENTRAL databases from inception to June 2015. Studies were eligible for inclusion if the study population was >50 % adults discharged from the ICU, with qualitative evaluation of patient outcomes. Studies were excluded if they focused on specific ICU patient populations or specialty ICUs. Citations were screened in duplicate, and two reviewers extracted data sequentially for each eligible article. Themes related to patient outcome domains were coded and categorized based on the main domains of the Patient Reported Outcomes Measurement Information System (PROMIS) framework.

Results: A total of 2735 citations were screened, and 22 full-text articles were eligible, with year of publication ranging from 1995 to 2015. All of the qualitative themes were extracted from eligible studies and then categorized using PROMIS descriptors: satisfaction with life (16 studies), including positive outlook, acceptance, gratitude, independence, boredom, loneliness, and wishing they had not lived; mental health (15 articles), including symptoms of post-traumatic stress disorder, anxiety, depression, and irritability/anger; physical health (14 articles), including mobility, activities of daily living, fatigue, appetite, sensory changes, muscle weakness, and sleep disturbances; social health (seven articles), including changes in friends/family relationships; and ability to participate in social roles and activities (six articles), including hobbies and disability.

Conclusion: ICU survivors may experience positive emotions and life satisfaction; however, a wide range of mental, physical, social, and functional sequelae occur after hospital discharge. These findings are important for understanding patient-centered outcomes in critical care and providing focus for future interventional studies aimed at improving outcomes of importance to ICU survivors.

Keywords: Critical illness; Patient outcomes; Qualitative research; Quality of life.

Figures

Fig. 1
Fig. 1
Domains adapted from the Patient Reported Outcomes Measurement Information System (PROMIS). Definitions adapted from http://www.nihpromis.com/measures/domainframework1; and https://www.healthypeople.gov/2020/topics-objectives/topic/health-related-quality-of-life-well-being

References

    1. Halpern NA, Pastores SM. Critical care medicine in the United States 2000–2005: an analysis of bed numbers, occupancy rates, payer mix, and costs. Crit Care Med. 2010;38:65–71. doi: 10.1097/CCM.0b013e3181b090d0.
    1. Zimmerman JE, Kramer AA, Knaus WA. Changes in hospital mortality for United States intensive care unit admissions from 1988 to 2012. Crit Care. 2013;17:R81. doi: 10.1186/cc12695.
    1. Desai SV, Law TJ, Needham DM. Long-term complications of critical care. Crit Care Med. 2011;39:371–379. doi: 10.1097/CCM.0b013e3181fd66e5.
    1. Parker AM, Sricharoenchai T, Raparla S, Schneck KW, Bienvenu OJ, Needham DM. Posttraumatic stress disorder in critical illness survivors: a metaanalysis. Crit Care Med. 2015;43:1121–1129. doi: 10.1097/CCM.0000000000000882.
    1. Fan E, Dowdy DW, Colantuoni E, Mendez-Tellez PA, Sevransky JE, Shanholtz C, et al. Physical complications in acute lung injury survivors: a two-year longitudinal prospective study. Crit Care Med. 2014;42:849–859. doi: 10.1097/CCM.0000000000000040.
    1. Rabiee A, Nikayin S, Hashem MD, Huang M, Dinglas VD, Bienvenu OJ, et al. Depressive symptoms after critical illness: a systematic review and meta-analysis. Crit Care Med. 2016;44:1744–1753. doi: 10.1097/CCM.0000000000001811.
    1. Needham DM, Davidson J, Cohen H, Hopkins RO, Weinert C, Wunsch H, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012;40:502–509. doi: 10.1097/CCM.0b013e318232da75.
    1. 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;348:683–693. doi: 10.1056/NEJMoa022450.
    1. 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;364:1293–1304. doi: 10.1056/NEJMoa1011802.
    1. Dowdy DW, Eid MP, Sedrakyan A, Mendez-Tellez PA, Pronovost PJ, Herridge MS, et al. Quality of life in adult survivors of critical illness: a systematic review of the literature. Intensive Care Med. 2005;31:611–620. doi: 10.1007/s00134-005-2592-6.
    1. Dowdy DW, Eid MP, Dennison CR, Mendez-Tellez PA, Herridge MS, Guallar E, et al. Quality of life after acute respiratory distress syndrome: a meta-analysis. Intensive Care Med. 2006;32:1115–1124. doi: 10.1007/s00134-006-0217-3.
    1. 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. doi: 10.1186/1745-6215-13-132.
    1. Needham DM. Understanding and improving clinical trial outcome measures in acute respiratory failure. Am J Respir Crit Care Med. 2014;189:875–877. doi: 10.1164/rccm.201402-0362ED.
    1. Turnbull AE, Rabiee A, Davis WE, Nasser MF, Venna VR, Lolitha R, 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. doi: 10.1097/CCM.0000000000001651.
    1. Keeley T, Williamson P, Callery P, Jones LL, Mathers J, Jones J, et al. The use of qualitative methods to inform Delphi surveys in core outcome set development. Trials. 2016;17:230. doi: 10.1186/s13063-016-1356-7.
    1. Agård AS, Egerod I, Tønnesen E, Lomborg K. Struggling for independence: a grounded theory study on convalescence of ICU survivors 12 months post ICU discharge. Intensive Crit Care Nurs. 2012;28:105–113. doi: 10.1016/j.iccn.2012.01.008.
    1. Cox CE, Docherty SL, Brandon DH, Whaley C, Attix DK, Clay AS, et al. Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers. Crit Care Med. 2009;37:2702–2708. doi: 10.1097/CCM.0b013e3181b6f64a.
    1. Czerwonka AI, Herridge MS, Chan L, Chu LM, Matte A, Cameron JI. Changing support needs of survivors of complex critical illness and their family caregivers across the care continuum: a qualitative pilot study of Towards RECOVER. J Crit Care. 2015;30:242–249. doi: 10.1016/j.jcrc.2014.10.017.
    1. McPeake J, Forrest E, Quasim T, Kinsella J, O’Neill A. Health and social consequences of an alcohol-related admission to critical care: a qualitative study. BMJ Open. 2016;6 doi: 10.1136/bmjopen-2015-009944.
    1. Merriweather JL, Salisbury LG, Walsh TS, Smith P. Nutritional care after critical illness: a qualitative study of patients’ experiences. J Hum Nutr Diet. 2016;29:127–136. doi: 10.1111/jhn.12287.
    1. O’Cathain A, Thomas KJ, Drabble SJ, Rudolph A, Goode J, Hewison J. Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study—a mixed methods study. Health Technol Assess. 2014;18:1–197.
    1. O’Cathain A, Goode J, Drabble SJ, Thomas KJ, Rudolph A, Hewison J. Getting added value from using qualitative research with randomized controlled trials: a qualitative interview study. Trials. 2014;15:215. doi: 10.1186/1745-6215-15-215.
    1. Rothrock NE, Hays RD, Spritzer K, Yount SE, Riley W, Cella D. Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS) J Clin Epidemiol. 2010;63:1195–1204. doi: 10.1016/j.jclinepi.2010.04.012.
    1. Reeve BB, Hays RD, Bjorner JB, Cook KF, Crane PK, Teresi JA, et al. Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS) Med Care. 2007;45:S22–S31. doi: 10.1097/01.mlr.0000250483.85507.04.
    1. Moher D, Liberati A, Tetzlaff J, Altman DG, PRISMA Group Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6:e1000097. doi: 10.1371/journal.pmed.1000097.
    1. Booth A. Supplementary Guidance for Inclusion of Qualitative Research in Cochrane Systematic Reviews of Interventions. Version 1 (updated August 2011). Cochrane Collaboration Qualitative Methods Group. 2011. . Accessed 25 Jan 2016.
    1. Bearman M, Dawson P. Qualitative synthesis and systematic review in health professions education. Med Educ. 2013;47:252–260. doi: 10.1111/medu.12092.
    1. Nikayin S, Rabiee A, Hashem MD, Huang M, Bienvenu OJ, Turnbull AE, et al. Anxiety symptoms in survivors of critical illness: a systematic review and meta-analysis. Gen Hosp Psychiatry. 2016;43:23–29. doi: 10.1016/j.genhosppsych.2016.08.005.
    1. Davydow DS, Gifford JM, Desai SV, Needham DM, Bienvenu OJ. Posttraumatic stress disorder in general intensive care unit survivors: a systematic review. Gen Hosp Psychiatry. 2008;30:421–434. doi: 10.1016/j.genhosppsych.2008.05.006.
    1. Noyes J, Popay J. Directly observed therapy and tuberculosis: how can a systematic review of qualitative research contribute to improving services? A qualitative meta-synthesis. J Adv Nurs. 2007;57:227–243. doi: 10.1111/j.1365-2648.2006.04092.x.
    1. Wu YP, Thompson D, Aroian KJ, McQuaid EL, Deatrick JA. Commentary: Writing and evaluating qualitative research reports. J Pediatr Psychol. 2016;41:493–505. doi: 10.1093/jpepsy/jsw032.
    1. Sawdon V, Woods I, Proctor M. Post-intensive care interviews: implications for future practice. Intensive Crit Care Nurs. 1995;11:329–332. doi: 10.1016/S0964-3397(95)80380-7.
    1. Hall-Smith J, Ball C, Coakley J. Follow-up services and the development of a clinical nurse specialist in intensive care. Intensive Crit Care Nurs. 1997;13:243–248. doi: 10.1016/S0964-3397(97)80374-6.
    1. Russell S. An exploratory study of patients’ perceptions, memories and experiences of an intensive care unit. J Adv Nurs. 1999;29:783–791. doi: 10.1046/j.1365-2648.1999.00953.x.
    1. Corrigan I, Samuelson KAM, Fridlund B, Thomé B. The meaning of posttraumatic stress-reactions following critical illness or injury and intensive care treatment. Intensive Crit Care Nurs. 2007;23:206–215. doi: 10.1016/j.iccn.2007.01.004.
    1. Storli SL, Lindseth A, Asplund K. A journey in quest of meaning: a hermeneutic-phenomenological study on living with memories from intensive care. Nurs Crit Care. 2008;13:86–96. doi: 10.1111/j.1478-5153.2007.00235.x.
    1. Walker W, Wright J, Danjoux G, Howell SJ, Martin D, Bonner S. Project Post Intensive Care eXercise (PIX): a qualitative exploration of intensive care unit survivors’ perceptions of quality of life post-discharge and experience of exercise rehabilitation. J Intensive Care Soc. 2015;16:37–44. doi: 10.1177/1751143714554896.
    1. Abdalrahim MS, Zeilani RS. Jordanian survivors’ experiences of recovery from critical illness: a qualitative study. Int Nurs Rev. 2014;61:570–577. doi: 10.1111/inr.12142.
    1. Williams SL. Recovering from the psychological impact of intensive care: how constructing a story helps. Nurs Crit Care. 2009;14:281–288. doi: 10.1111/j.1478-5153.2009.00354.x.
    1. Maddox M, Dunn SV, Pretty LE. Psychosocial recovery following ICU: experiences and influences upon discharge to the community. Intensive Crit Care Nurs. 2001;17:6–15. doi: 10.1054/iccn.2000.1536.
    1. Chiang VCL. Surviving a critical illness through mutually being there with each other: a grounded theory study. Intensive Crit Care Nurs. 2011;27:317–330. doi: 10.1016/j.iccn.2011.09.001.
    1. Adamson H, Murgo M, Boyle M, Kerr S, Crawford M, Elliott D. Memories of intensive care and experiences of survivors of a critical illness: an interview study. Intensive Crit Care Nurs. 2004;20:257–263. doi: 10.1016/j.iccn.2004.06.005.
    1. Ramsay P, Huby G, Thompson A, Walsh T. Intensive care survivors’ experiences of ward-based care: Meleis’ theory of nursing transitions and role development among critical care outreach services. J Clin Nurs. 2014;23:605–615. doi: 10.1111/jocn.12452.
    1. Ewens BA, Hendricks JM, Sundin D. Never ending stories: visual diarizing to recreate autobiographical memory of intensive care unit survivors. Nurs Crit Care. 2014. doi:10.1111/nicc.12093. (Published online 6 October 2014).
    1. Chahraoui K, Laurent A, Bioy A, Quenot J-P. Psychological experience of patients 3 months after a stay in the intensive care unit: a descriptive and qualitative study. J Crit Care. 2015;30:599–605. doi: 10.1016/j.jcrc.2015.02.016.
    1. Papathanassoglou EDE, Patiraki EI. Transformations of self: a phenomenological investigation into the lived experience of survivors of critical illness. Nurs Crit Care. 2003;8:13–21. doi: 10.1046/j.1478-5153.2003.00004.x.
    1. Deacon KS. Re-building life after ICU: a qualitative study of the patients’ perspective. Intensive Crit Care Nurs. 2012;28:114–122. doi: 10.1016/j.iccn.2011.11.008.
    1. Ewens B, Chapman R, Tulloch A, Hendricks JM. ICU survivors’ utilisation of diaries post discharge: a qualitative descriptive study. Aust Crit Care. 2014;27:28–35. doi: 10.1016/j.aucc.2013.07.001.
    1. Talisayon R, Buckley T, McKinley S. Acute post-traumatic stress in survivors of critical illness who were mechanically ventilated: a mixed methods study. Intensive Crit Care Nurs. 2011;27:338–346. doi: 10.1016/j.iccn.2011.10.001.
    1. Pattison N, O’Gara G, Rattray J. After critical care: patient support after critical care. A mixed method longitudinal study using email interviews and questionnaires. Intensive Crit Care Nurs. 2015;31:213–222. doi: 10.1016/j.iccn.2014.12.002.
    1. Prinjha S, Field K, Rowan K. What patients think about ICU follow-up services: a qualitative study. Crit Care. 2009;13:R46. doi: 10.1186/cc7769.
    1. Hopkins RO, Girard TD. Medical and economic implications of cognitive and psychiatric disability of survivorship. Semin Respir Crit Care Med. 2012;33:348–356. doi: 10.1055/s-0032-1321984.
    1. Hopkins RO, Weaver LK, Chan KJ, Orme JF. Quality of life, emotional, and cognitive function following acute respiratory distress syndrome. J Int Neuropsychol Soc. 2004;10:1005–1017.
    1. Patient-Reported Outcomes Measurement Information System (PROMIS). . Accessed 29 Feb 2016.
    1. Hahn EA, Devellis RF, Bode RK, Garcia SF, Castel LD, Eisen SV, et al. Measuring social health in the patient-reported outcomes measurement information system (PROMIS): item bank development and testing. Qual Life Res. 2010;19:1035–1044. doi: 10.1007/s11136-010-9654-0.
    1. Hofhuis JGM, Spronk PE, van Stel HF, Schrijvers GJP, Rommes JH, Bakker J. The impact of critical illness on perceived health-related quality of life during ICU treatment, hospital stay, and after hospital discharge: a long-term follow-up study. Chest. 2008;133:377–385. doi: 10.1378/chest.07-1217.
    1. Cuthbertson BH, Scott J, Strachan M, Kilonzo M, Vale L. Quality of life before and after intensive care. Anaesthesia. 2005;60:332–339. doi: 10.1111/j.1365-2044.2004.04109.x.
    1. Cuthbertson BH, Roughton S, Jenkinson D, Maclennan G, Vale L. Quality of life in the five years after intensive care: a cohort study. Crit Care. 2010;14:R6. doi: 10.1186/cc8848.
    1. Orwelius L, Nordlund A, Nordlund P, Simonsson E, Bäckman C, Samuelsson A, et al. Pre-existing disease: the most important factor for health related quality of life long-term after critical illness: a prospective, longitudinal, multicentre trial. Crit Care. 2010;14:R67. doi: 10.1186/cc8967.
    1. Chandola T, Jenkinson C. The new UK National Statistics Socio-Economic Classification (NS-SEC); investigating social class differences in self-reported health status. J Public Health Med. 2000;22:182–190. doi: 10.1093/pubmed/22.2.182.
    1. Griffiths J, Hatch RA, Bishop J, Morgan K, Jenkinson C, Cuthbertson BH, et al. An exploration of social and economic outcome and associated health-related quality of life after critical illness in general intensive care unit survivors: a 12-month follow-up study. Crit Care. 2013;17:R100. doi: 10.1186/cc12745.
    1. Hofhuis JGM, van Stel HF, Schrijvers AJP, Rommes JH, Bakker J, Spronk PE. Health-related quality of life in critically ill patients: how to score and what is the clinical impact? Curr Opin Crit Care. 2009;15:425–430. doi: 10.1097/MCC.0b013e32833079e4.
    1. Orwelius L, Bäckman C, Fredrikson M, Simonsson E, Nordlund P, Samuelsson A, et al. Social integration: an important factor for health-related quality of life after critical illness. Intensive Care Med. 2011;37:831–838. doi: 10.1007/s00134-011-2137-0.
    1. Davydow DS, Gifford JM, Desai SV, Bienvenu OJ, Needham DM. Depression in general intensive care unit survivors: a systematic review. Intensive Care Med. 2009;35:769–809. doi: 10.1007/s00134-009-1396-5.
    1. Pearlin LI, Schooler C. The structure of coping. J Health Soc Behav. 1978;19:2–21. doi: 10.2307/2136319.
    1. Schou I, Ekeberg Ø, Ruland CM. The mediating role of appraisal and coping in the relationship between optimism-pessimism and quality of life. Psychooncology. 2005;14:718–727. doi: 10.1002/pon.896.
    1. Schou I, Ekeberg Ø, Ruland CM, Sandvik L, Kåresen R. Pessimism as a predictor of emotional morbidity one year following breast cancer surgery. Psychooncology. 2004;13:309–320. doi: 10.1002/pon.747.
    1. Cox CE, Porter LS, Hough CL, White DB, Kahn JM, Carson SS, et al. Development and preliminary evaluation of a telephone-based coping skills training intervention for survivors of acute lung injury and their informal caregivers. Intensive Care Med. 2012;38:1289–1297. doi: 10.1007/s00134-012-2567-3.
    1. Cox CE, Porter LS, Buck PJ, Hoffa M, Jones D, Walton B, et al. Development and preliminary evaluation of a telephone-based mindfulness training intervention for survivors of critical illness. Ann Am Thorac Soc. 2014;11:173–181. doi: 10.1513/AnnalsATS.201308-283OC.
    1. Bingham CO, Bartlett SJ, Merkel PA, Mielenz TJ, Pilkonis PA, Edmundson L, et al. Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects. Qual Life Res. 2016;25(8):2109–2116. doi: 10.1007/s11136-016-1246-1.
    1. 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.
    1. Kirkham JJ, Gargon E, Clarke M, Williamson PR. Can a core outcome set improve the quality of systematic reviews?—a survey of the Co-ordinating Editors of Cochrane Review Groups. Trials. 2013;14:21. doi: 10.1186/1745-6215-14-21.
    1. Clarke M, Williamson PR. Core outcome sets and systematic reviews. Syst Rev. 2016;5:11. doi: 10.1186/s13643-016-0188-6.
    1. Walsh D, Downe S. Meta-synthesis method for qualitative research: a literature review. J Adv Nurs. 2005;50:204–211. doi: 10.1111/j.1365-2648.2005.03380.x.

Source: PubMed

3
Iratkozz fel