title: Determining comorbidities and quality of life among pediatric survivors of extracorporeal life support.
abstract: OBJECTIVE
  The purpose of this study is to describe health-related quality of life (HRQoL) and the prevalence of comorbidities in pediatric survivors of extracorporeal life support (ECLS) and to determine risk factors for poor HRQoL.
  
  
  METHODS
  The study design was a retrospective cohort and prospective follow-up study of patients who received ECLS in the pediatric intensive care unit at Egleston Children's Hospital from 2006 to 2013. Quality of life was measured using the Pediatric Quality of Life Inventory (PedsQL 4.0) completed by either parent proxies or the survivors themselves. Clinical data were obtained via review of electronic medical records.
  
  
  RESULTS
  Surveys were sent to 37 parent proxies or survivors with a response rate of 43.2%. Survivors ranged in age from 2 to 21 years with follow-up range of 1 to 7.5 years. Primary respiratory failure due to pneumonia was the reason for ECLS in 81.3%. Mean total PedsQL scores were 73.9 (±21.3) with 11 survivors (69.8%) having a normal quality of life. None of the clinical characteristics (including age, ECLS length, or length of stay) correlated with PedsQL scores. The most commonly reported comorbidities included readmission les than 1 year after ECLS (46.7%) and "problems with school" (25%).
  
  
  CONCLUSIONS
  Survivors of pediatric extracorporeal membrane oxygenation can exhibit good HRQoL scores yet may be at risk for long-term adverse effects, such as lower psychosocial functioning and problems with school. A rigorous prospective investigation of the long-term follow-up of this patient cohort is needed to further evaluate these conclusions and to work toward the best possible outcomes for recipients of this resource-intensive therapy.
authors.affiliation: Department of Pediatrics, Emory University, Pediatric Critical Care, Children's Healthcare of Atlanta, Atlanta, GA. Electronic address: hkchand1@texaschildrens.org.
authors.forename: Heather K
authors.initials: HK
authors.lastname: Chandler
authors.affiliation: Department of Pediatrics, Emory University, Pediatric Critical Care, Children's Healthcare of Atlanta, Atlanta, GA.
authors.forename: Beatriz
authors.initials: B
authors.lastname: Teppa
authors.affiliation: Pediatric Palliative Care, Children's Healthcare of Atlanta, Atlanta, GA.
authors.forename: Khaliah A
authors.initials: KA
authors.lastname: Johnson
authors.affiliation: Department of Biostatistics, Emory University, Atlanta, GA.
authors.forename: Courtney
authors.initials: C
authors.lastname: McCracken
authors.affiliation: Department of Pediatrics, Emory University, Pediatric Critical Care, Children's Healthcare of Atlanta, Atlanta, GA.
authors.forename: James D
authors.initials: JD
authors.lastname: Fortenberry
authors.affiliation: Department of Pediatrics, Emory University, Pediatric Critical Care, Children's Healthcare of Atlanta, Atlanta, GA.
authors.forename: Matthew L
authors.initials: ML
authors.lastname: Paden
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015897:Comorbidity; D015199:Extracorporeal Membrane Oxygenation / Q000379:methods*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D015278:Intensive Care Units, Pediatric / Q000706:statistics & numerical data; D008297:Male; D010290:Parents; D010372:Pediatrics; D011446:Prospective Studies; D019727:Proxy; D011788:Quality of Life; D012131:Respiratory Insufficiency / Q000628:therapy; D012189:Retrospective Studies; D012307:Risk Factors; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology / Q000706:statistics & numerical data
keywords: Extracorporeal membrane oxygenation; Outcome assessment; Pediatrics; Quality of life; Respiratory failure