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J Pediatr Intensive Care
DOI: 10.1055/s-0042-1747935
Original Article

Post-Intensive Care Syndrome in a Cohort of School-Aged Children and Adolescent ICU Survivors: The Importance of Follow-up in the Acute Recovery Phase

Trevor A. Hall 
1   Division of Pediatric Psychology, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, United States
2   Pediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, Oregon, United States
,
Rachel K. Greene
1   Division of Pediatric Psychology, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, United States
,
Justin B. Lee
1   Division of Pediatric Psychology, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, United States
,
Skyler Leonard
1   Division of Pediatric Psychology, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, United States
,
Kathryn R. Bradbury
3   Children's Neuropsychological Services, Andover, Massachusetts, United States
,
Kurt Drury
2   Pediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, Oregon, United States
4   Division of Critical Care, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, United States
,
Grace Recht
2   Pediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, Oregon, United States
,
Julie Randall
2   Pediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, Oregon, United States
,
Megan E. Norr
1   Division of Pediatric Psychology, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, United States
,
Cydni N. Williams
2   Pediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, Oregon, United States
4   Division of Critical Care, Department of Pediatrics, Oregon Health & Science University, Portland, Oregon, United States
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Abstract

Pediatric intensive care unit (PICU) survivors experience a collection of physical, cognitive, emotional, and social symptoms named post-intensive care syndrome (PICS). We aimed to quantify PICS morbidities from multiple stakeholder perspectives across domains. Using physician, neuropsychologist, and parent/caregiver-completed outcome measures across domains in a cross-sectional analysis of 186 children between the ages of 8 and 19 years with data from a PICU follow-up clinic 1 to 3 months after PICU discharge, we quantified PICS morbidities and used Spearman correlation to evaluate interdependence of PICS domains. Compared with pre-hospitalization functioning, new PICS-related morbidities were observed and significant correlations were identified between the PICS domains. Results highlight the need to identify and support patients and families for multiple morbidities simultaneously across all relevant PICS domains; moreover, an important divergence between caregiver report, physician, and neuropsychologist assessment was also found, showcasing the importance of multiple assessments and perspectives. New PICS morbidities across domains are common after discharge from the PICU, and timely follow-up care is needed that involves collaboration/integration of physicians, neuropsychologists, youth, and families to effectively identify and treat PICS-related issues.

Keywords

post-intensive care syndrome - outcomes - brain injury

Funding

C.N.W. received support from the Agency for Healthcare Research and Quality (AHRQ; K12HS022981) for this research and is currently supported by the National Heart Lung and Blood Institute (NHLBI; K23HL150229). The content is solely the responsibility of the authors and does not necessarily represent the official views of the AHRQ or NHLBI.


Supplementary Material



Publication History

Received: 30 November 2021

Accepted: 06 March 2022

Article published online:
27 May 2022

© 2022. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

  • References

  • 1 Pinto NP, Rhinesmith EW, Kim TY, Ladner PH, Pollack MM. Long-term function after pediatric critical illness: results from the survivor outcomes study. Pediatr Crit Care Med 2017; 18 (03) e122-e130
    CrossrefPubMedGoogle Scholar
  • 2 Colville G, Pierce C. Patterns of post-traumatic stress symptoms in families after paediatric intensive care. Intensive Care Med 2012; 38 (09) 1523-1531
    CrossrefPubMedGoogle Scholar
  • 3 Manning JC, Pinto NP, Rennick JE, Colville G, Curley MAQ. Conceptualizing post intensive care syndrome in children—the PICS-p framework. Pediatr Crit Care Med 2018; 19 (04) 298-300
    CrossrefPubMedGoogle Scholar
  • 4 Di Scale C, Osberg JS, Savage RC. Children hospitalized for traumatic brain injury: transition to postacute care. J Head Trauma Rehabil 1997; 12: 1-10
    CrossrefPubMedGoogle Scholar
  • 5 Slomine BS, McCarthy ML, Ding R. et al; CHAT Study Group. Health care utilization and needs after pediatric traumatic brain injury. Pediatrics 2006; 117 (04) e663-e674
    CrossrefPubMedGoogle Scholar
  • 6 Bennett TD, Niedzwecki CM, Korgenski EK, Bratton SL. Initiation of physical, occupational, and speech therapy in children with traumatic brain injury. Arch Phys Med Rehabil 2013; 94 (07) 1268-1276
    CrossrefPubMedGoogle Scholar
  • 7 Keenan HT, Murphy NA, Staheli R, Savitz LA. Healthcare utilization in the first year after pediatric traumatic brain injury in an insured population. J Head Trauma Rehabil 2013; 28 (06) 426-432
    CrossrefPubMedGoogle Scholar
  • 8 Greene NH, Kernic MA, Vavilala MS, Rivara FP. Variation in pediatric traumatic brain injury outcomes in the United States. Arch Phys Med Rehabil 2014; 95 (06) 1148-1155
    CrossrefPubMedGoogle Scholar
  • 9 Williams CN, Eriksson CO, Kirby A. et al. Hospital mortality and functional outcomes in pediatric neurocritical care. Hosp Pediatr 2019; 9 (12) 958-966
    CrossrefPubMedGoogle Scholar
  • 10 Hartman ME, Williams CN, Hall TA, Bosworth CC, Piantino JA. Post-intensive-care syndrome for the pediatric neurologist. Pediatr Neurol 2020; 108: 47-53
    CrossrefPubMedGoogle Scholar
  • 11 Hardy KK, Olson K, Cox SM, Kennedy T, Walsh KS. Systematic review: a prevention-based model of neuropsychological assessment for children with medical illness. J Pediatr Psychol 2017; 42 (08) 815-822
    CrossrefPubMedGoogle Scholar
  • 12 Hall TA, Leonard S, Bradbury K. et al. Post-intensive care syndrome in a cohort of infants & young children receiving integrated care via a pediatric critical care & neurotrauma recovery program: a pilot investigation. Clin Neuropsychol 2022; 36 (03) 639-663
    CrossrefPubMedGoogle Scholar
  • 13 Williams CN, Kirby A, Piantino J. If you build it, they will come: initial experience with a multi-disciplinary pediatric neurocritical care follow-up clinic. Children (Basel) 2017; 4 (09) E83
    PubMedGoogle Scholar
  • 14 Dodd JN, Hall TA, Guilliams K. et al. Optimizing neurocritical care follow-up through the integration of neuropsychology. Pediatr Neurol 2018; 89: 58-62
    CrossrefPubMedGoogle Scholar
  • 15 Holding EZ, Turner EM, Hall TA, Leonard S, Bradbury KR, Williams CN. The association between functional status and health-related quality of life following discharge from the pediatric intensive care unit. Neurocrit Care 2021; 35 (02) 347-357
    CrossrefPubMedGoogle Scholar
  • 16 Pollack MM, Holubkov R, Glass P. et al; Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Functional Status Scale: new pediatric outcome measure. Pediatrics 2009; 124 (01) e18-e28
    CrossrefPubMedGoogle Scholar
  • 17 Wilkinson GS, Robertson GJ. Wide Range Achievement Test. 4th ed.. London, UK: Pearson; 2006
    Google Scholar
  • 18 Wilkinson GS, Robertson GJ. Wide Range Achievement Test. 5th ed.. London, UK: Pearson; 2017
    Google Scholar
  • 19 Cohen M. Children's Memory Scale. London, UK: Pearson; 1997
    Google Scholar
  • 20 Wechsler D. Wechsler Adult Intelligence Scale. 4th Edition.. London, UK: Pearson; 2008
    Google Scholar
  • 21 Sherman EMS, Brooks BL. Children and Adolescent Memory Profile. Carmel, IN: PAR; 2015
    Google Scholar
  • 22 Delis DC, Kaplan E, Kramer JH. Delis-Kaplan Executive Function System. London, UK: Pearson; 2001
    Google Scholar
  • 23 Instruments L. Grooved Pegboard. Carmel, IN: PAR; 1964
    Google Scholar
  • 24 Wechsler D. Wechsler Intelligence Scale for Children. 5th ed.. London, UK: Pearson; 2014
    Google Scholar
  • 25 Bertisch H, Rivara FP, Kisala PA. et al. Psychometric evaluation of the pediatric and parent-proxy Patient-Reported Outcomes Measurement Information System and the Neurology and Traumatic Brain Injury Quality of Life measurement item banks in pediatric traumatic brain injury. Qual Life Res 2017; 26 (07) 1887-1899
    CrossrefPubMedGoogle Scholar
  • 26 Reeve BB, McFatrich M, Mack JW. et al. Validity and reliability of the pediatric patient-reported outcomes version of the common terminology criteria for adverse events. J Natl Cancer Inst 2020; 112 (11) 1143-1152
    CrossrefPubMedGoogle Scholar
  • 27 Singh A, Panepinto JA. Clinical meaning of PROMIS pain domains for children with sickle cell disease. Blood Adv 2019; 3 (15) 2244-2249
    CrossrefPubMedGoogle Scholar
  • 28 Hinds PS, Wang J, Cheng YI. et al. PROMIS pediatric measures validated in a longitudinal study design in pediatric oncology. Pediatr Blood Cancer 2019; 66 (05) e27606
    CrossrefPubMedGoogle Scholar
  • 29 Cunningham NR, Kashikar-Zuck S, Mara C. et al. Development and validation of the self-reported PROMIS pediatric pain behavior item bank and short form scale. Pain 2017; 158 (07) 1323-1331
    CrossrefPubMedGoogle Scholar
  • 30 Bruni O, Ottaviano S, Guidetti V. et al. The Sleep Disturbance Scale for Children (SDSC). Construction and validation of an instrument to evaluate sleep disturbances in childhood and adolescence. J Sleep Res 1996; 5 (04) 251-261
    CrossrefPubMedGoogle Scholar
  • 31 Irwin DE, Gross HE, Stucky BD. et al. Development of six PROMIS pediatrics proxy-report item banks. Health Qual Life Outcomes 2012; 10: 22
    CrossrefPubMedGoogle Scholar
  • 32 Prins A, Bovin MJ, Smolenski DJ. et al. The Primary Care PTSD Screen for DSM-5 (PC-PTSD-5): development and evaluation within a veteran primary care sample. J Gen Intern Med 2016; 31 (10) 1206-1211
    CrossrefPubMedGoogle Scholar
  • 33 Gioia GA, Isquith PK, Guy SC, Kenworthy L. Behavior Rating Inventory of Executive Function. 2nd ed.. Carmel, IN: PAR Inc.; 2015
    Google Scholar
  • 34 Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001; 39 (08) 800-812
    CrossrefPubMedGoogle Scholar
  • 35 Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes 2004; 2: 55
    CrossrefPubMedGoogle Scholar
  • 36 IBM. SPSS. 2017
    PubMed
  • 37 McCabe DP, Roediger HL, McDaniel MA, Balota DA, Hambrick DZ. The relationship between working memory capacity and executive functioning: evidence for a common executive attention construct. Neuropsychology 2010; 24 (02) 222-243
    CrossrefPubMedGoogle Scholar
  • 38 Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003; 3 (06) 329-341
    CrossrefPubMedGoogle Scholar
  • 39 Babikian T, Asarnow R. Neurocognitive outcomes and recovery after pediatric TBI: meta-analytic review of the literature. Neuropsychology 2009; 23 (03) 283-296
    CrossrefPubMedGoogle Scholar
  • 40 Studer M, Boltshauser E, Capone Mori A. et al. Factors affecting cognitive outcome in early pediatric stroke. Neurology 2014; 82 (09) 784-792
    CrossrefPubMedGoogle Scholar
  • 41 Babikian T, Merkley T, Savage RC, Giza CC, Levin H. Chronic aspects of pediatric traumatic brain injury: review of the literature. J Neurotrauma 2015; 32 (23) 1849-1860
    CrossrefPubMedGoogle Scholar
  • 42 Moran LM, Babikian T, Del Piero L. et al. The UCLA study of predictors of cognitive functioning following moderate/severe pediatric traumatic brain injury. J Int Neuropsychol Soc 2016; 22 (05) 512-519
    CrossrefPubMedGoogle Scholar
  • 43 Slomine BS, Silverstein FS, Christensen JR. et al; THAPCA Trial Group. Neurobehavioral outcomes in children after out-of-hospital cardiac arrest. Pediatrics 2016; 137 (04) e20153412
    CrossrefPubMedGoogle Scholar
  • 44 Watson RS, Choong K, Colville G. et al. Life after critical illness in children-toward an understanding of pediatric post-intensive care syndrome. J Pediatr 2018; 198: 16-24
    CrossrefPubMedGoogle Scholar
  • 45 Williams CN, Hartman ME, Guilliams KP. et al. Postintensive care syndrome in pediatric critical care survivors: therapeutic options to improve outcomes after acquired brain injury. Curr Treat Options Neurol 2019; 21 (10) 49
    CrossrefPubMedGoogle Scholar
  • 46 Bone MF, Feinglass JM, Goodman DM. Risk factors for acquiring functional and cognitive disabilities during admission to a PICU*. Pediatr Crit Care Med 2014; 15 (07) 640-648
    CrossrefPubMedGoogle Scholar
  • 47 Turner AD, Sullivan T, Drury K. et al. Cognitive dysfunction after analgesia and sedation: out of the operating room and into the pediatric intensive care unit. Front Behav Neurosci 2021; 15: 713668
    CrossrefPubMedGoogle Scholar
  • 48 Kachmar AG, Irving SY, Connolly CA, Curley MAQ. A systematic review of risk factors associated with cognitive impairment after pediatric critical illness. Pediatr Crit Care Med 2018; 19 (03) e164-e171
    CrossrefPubMedGoogle Scholar
  • 49 Rennick JE, Rashotte J. Psychological outcomes in children following pediatric intensive care unit hospitalization: a systematic review of the research. J Child Health Care 2009; 13 (02) 128-149
    CrossrefPubMedGoogle Scholar
  • 50 Davydow DS, Richardson LP, Zatzick DF, Katon WJ. Psychiatric morbidity in pediatric critical illness survivors: a comprehensive review of the literature. Arch Pediatr Adolesc Med 2010; 164 (04) 377-385
    CrossrefPubMedGoogle Scholar
  • 51 Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med 2012; 40 (02) 618-624
    CrossrefPubMedGoogle Scholar
  • 52 Nelson LP, Gold JI. Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: a review. Pediatr Crit Care Med 2012; 13 (03) 338-347
    CrossrefPubMedGoogle Scholar
  • 53 Baker SC, Gledhill JA. Systematic review of interventions to reduce psychiatric morbidity in parents and children after PICU admissions. Pediatr Crit Care Med 2017; 18 (04) 343-348
    CrossrefPubMedGoogle Scholar
  • 54 Riley AR, Williams CN, Moyer D. et al. Parental posttraumatic stress symptoms in the context of pediatric post intensive care syndrome: impact on the family and opportunities for intervention. Clin Pract Pediatr Psychol 2021; 9 (02) 156-166
    CrossrefPubMedGoogle Scholar
  • 55 Williams CN, Eriksson C, Piantino J. et al. Long-term sequelae of pediatric neurocritical care: the parent perspective. J Pediatr Intensive Care 2018; 7 (04) 173-181
    Article in Thieme ConnectPubMedGoogle Scholar
  • 56 Linton S, Grant C, Pellegrini J. Supporting families through discharge from PICU to the ward: the development and evaluation of a discharge information brochure for families. Intensive Crit Care Nurs 2008; 24 (06) 329-337
    CrossrefPubMedGoogle Scholar
  • 57 Yeates KO, Taylor HG, Walz NC, Stancin T, Wade SL. The family environment as a moderator of psychosocial outcomes following traumatic brain injury in young children. Neuropsychology 2010; 24 (03) 345-356
    CrossrefPubMedGoogle Scholar
  • 58 Landolt MA, Ystrom E, Sennhauser FH, Gnehm HE, Vollrath ME. The mutual prospective influence of child and parental post-traumatic stress symptoms in pediatric patients. J Child Psychol Psychiatry 2012; 53 (07) 767-774
    CrossrefPubMedGoogle Scholar
  • 59 Nelson LP, Lachman SE, Li SW, Gold JI. The effects of family functioning on the development of posttraumatic stress in children and their parents following admission to the PICU. Pediatr Crit Care Med 2019; 20 (04) e208-e215
    CrossrefPubMedGoogle Scholar
  • 60 Bradbury KR, Williams C, Leonard S. et al. Emotional aspects of pediatric post-intensive care syndrome following traumatic brain injury. J Child Adolesc Trauma 2021; 14 (02) 177-187
    CrossrefPubMedGoogle Scholar
  • 61 Hooper SR, Alexander J, Moore D. et al. Caregiver reports of common symptoms in children following a traumatic brain injury. NeuroRehabilitation 2004; 19 (03) 175-189
    CrossrefPubMedGoogle Scholar
  • 62 Meert K, Slomine BS, Christensen JR. et al. Burden of caregiving after a child's in-hospital cardiac arrest. Resuscitation 2018; 127: 44-50
    CrossrefPubMedGoogle Scholar
  • 63 Yagiela LM, Carlton EF, Meert KL, Odetola FO, Cousino MK. Parent medical traumatic stress and associated family outcomes after pediatric critical illness: a systematic review. Pediatr Crit Care Med 2019; 20 (08) 759-768
    CrossrefPubMedGoogle Scholar
  • 64 Logan GE, Sahrmann JM, Gu H, Hartman ME. Parental mental health care after their child's pediatric intensive care hospitalization. Pediatr Crit Care Med 2020; 21 (11) 941-948
    CrossrefPubMedGoogle Scholar
  • 65 Banyard VL, Williams LM, Siegel JA. The impact of complex trauma and depression on parenting: an exploration of mediating risk and protective factors. Child Maltreat 2003; 8 (04) 334-349
    CrossrefPubMedGoogle Scholar
  • 66 Lambert JE, Holzer J, Hasbun A. Association between parents' PTSD severity and children's psychological distress: a meta-analysis. J Trauma Stress 2014; 27 (01) 9-17
    CrossrefPubMedGoogle Scholar
  • 67 Cousino MK, Rea KE, Schumacher KR, Magee JC, Fredericks EM. A systematic review of parent and family functioning in pediatric solid organ transplant populations. Pediatr Transplant 2017; 21 (03) DOI: 10.1111/petr.12900.
    CrossrefPubMedGoogle Scholar
  • 68 Cross D, Vance LA, Kim YJ. et al. Trauma exposure, PTSD, and parenting in a community sample of low-income, predominantly African American mothers and children. Psychol Trauma 2018; 10 (03) 327-335
    CrossrefPubMedGoogle Scholar