Health Related Quality of Life and Neurocognitive Outcomes in the First Year after Pediatric Acute Liver Failure

Pediatric Acute Liver Failure Study Group

Research output: Contribution to journalArticle

Abstract

Objective: To determine health-related quality of life (HRQoL) and neurocognitive impairment in survivors of pediatric acute liver failure (PALF). Study design: A longitudinal prospective study was conducted. At 6 and 12 months after PALF presentation, surveys of HRQoL were completed for 2- to 19-year-olds and executive functioning for ages 2-16 years. At 12 months, patients 3-16 years of age completed neurocognitive testing. HRQoL scores were compared with a healthy, matched sample. Neurocognitive scores were compared with norms; executive functioning scores were examined categorically. Results: A total of 52 parent-report HRQoL surveys were completed at 6 months, 48 at 12 months; 25 patients completed neurocognitive testing. The median age at 6 months was 7.9 years (range 3.5-15.0), and final diagnosis was indeterminate for 46.2% (n = 24). Self and parent-report on Pediatric Quality of Life Inventory Generic and Multidimensional Fatigue scales fell below the healthy sample at 6 months and 12 months (almost all P <.001). Children reported lower mean scores on cognitive fatigue at 12 months (60.91 ± 22.99) compared with 6 months (73.61 ± 27.49, P =.006). The distribution of Behavior Rating Inventory of Executive Function scores was shifted downward on parent-report (preschool) for all indices at 6 months (n = 14, P ≤.003); Global Executive Composite and Emergent Metacognition at 12 months (n = 10, P =.03). Visual Motor Integration (VMI-6) Copying (mean = 90.3 ± 13.8, P =.0002) and VMI-6 Motor Coordination (mean = 85.1 ± 15.2 P =.0002) fell below norms, but full scale IQ (Wechsler Scales) and Attention (Conners’ Continuous Performance Test) did not. Conclusions: Survivors of PALF appear to show deficits in motor skills, executive functioning, HRQoL, and evidence for worsening cognitive fatigue from 6 to 12 months following PALF presentation.

Original languageEnglish (US)
Pages (from-to)129-138.e3
JournalJournal of Pediatrics
Volume196
DOIs
StatePublished - May 1 2018

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Acute Liver Failure
Quality of Life
Pediatrics
Fatigue
Survivors
Wechsler Scales
Equipment and Supplies
Motor Skills
Executive Function
Self Report
Longitudinal Studies
Prospective Studies

Keywords

  • cognition disorders
  • cognitive fatigue
  • executive functioning
  • pediatric liver disease
  • pediatric liver transplantation

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

Cite this

Health Related Quality of Life and Neurocognitive Outcomes in the First Year after Pediatric Acute Liver Failure. / Pediatric Acute Liver Failure Study Group.

In: Journal of Pediatrics, Vol. 196, 01.05.2018, p. 129-138.e3.

Research output: Contribution to journalArticle

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abstract = "Objective: To determine health-related quality of life (HRQoL) and neurocognitive impairment in survivors of pediatric acute liver failure (PALF). Study design: A longitudinal prospective study was conducted. At 6 and 12 months after PALF presentation, surveys of HRQoL were completed for 2- to 19-year-olds and executive functioning for ages 2-16 years. At 12 months, patients 3-16 years of age completed neurocognitive testing. HRQoL scores were compared with a healthy, matched sample. Neurocognitive scores were compared with norms; executive functioning scores were examined categorically. Results: A total of 52 parent-report HRQoL surveys were completed at 6 months, 48 at 12 months; 25 patients completed neurocognitive testing. The median age at 6 months was 7.9 years (range 3.5-15.0), and final diagnosis was indeterminate for 46.2{\%} (n = 24). Self and parent-report on Pediatric Quality of Life Inventory Generic and Multidimensional Fatigue scales fell below the healthy sample at 6 months and 12 months (almost all P <.001). Children reported lower mean scores on cognitive fatigue at 12 months (60.91 ± 22.99) compared with 6 months (73.61 ± 27.49, P =.006). The distribution of Behavior Rating Inventory of Executive Function scores was shifted downward on parent-report (preschool) for all indices at 6 months (n = 14, P ≤.003); Global Executive Composite and Emergent Metacognition at 12 months (n = 10, P =.03). Visual Motor Integration (VMI-6) Copying (mean = 90.3 ± 13.8, P =.0002) and VMI-6 Motor Coordination (mean = 85.1 ± 15.2 P =.0002) fell below norms, but full scale IQ (Wechsler Scales) and Attention (Conners’ Continuous Performance Test) did not. Conclusions: Survivors of PALF appear to show deficits in motor skills, executive functioning, HRQoL, and evidence for worsening cognitive fatigue from 6 to 12 months following PALF presentation.",
keywords = "cognition disorders, cognitive fatigue, executive functioning, pediatric liver disease, pediatric liver transplantation",
author = "{Pediatric Acute Liver Failure Study Group} and Sorensen, {Lisa G.} and Katie Neighbors and Hardison, {Regina M.} and Loomes, {Kathleen M.} and Varni, {James W.} and Ng, {Vicky L.} and Squires, {Robert H.} and Alonso, {Estella M.} and Kathryn Bukauskas and Madeline Schulte and Narkewicz, {Michael R.} and Michelle Hite and Rand, {Elizabeth B.} and David Piccoli and Deborah Kawchak and Christa Seidman and Rene Romero and Saul Karpen and {de la Cruz-Tracy}, Liezl and Kelsey Hunt and Girish Subbarao and Ann Klipsch and Sarah Munson and Susan Kelly and Rosenthal, {Philip J.} and Shannon Fleck and Leonis, {Mike A.} and John Bucuvalas and Tracie Horning and Baez, {Norberto Rodriguez} and Shirley Montanye and Margaret Cowie and Horslen, {Simon P.} and Karen Murray and Melissa Young and Heather Nielson and Jani Klein and Rudnick, {David A.} and Shepherd, {Ross W.} and Kathy Harris and Karpen, {Saul J.} and {De La Torre}, Alejandro and {Dell Olio}, Dominic and Deirdre Kelly and Carla Lloyd and Lobritto, {Steven J.} and Sumerah Bakhsh and Maureen Jonas and Elifoson, {Scott A.} and Roshan Raza",
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T1 - Health Related Quality of Life and Neurocognitive Outcomes in the First Year after Pediatric Acute Liver Failure

AU - Pediatric Acute Liver Failure Study Group

AU - Sorensen, Lisa G.

AU - Neighbors, Katie

AU - Hardison, Regina M.

AU - Loomes, Kathleen M.

AU - Varni, James W.

AU - Ng, Vicky L.

AU - Squires, Robert H.

AU - Alonso, Estella M.

AU - Bukauskas, Kathryn

AU - Schulte, Madeline

AU - Narkewicz, Michael R.

AU - Hite, Michelle

AU - Rand, Elizabeth B.

AU - Piccoli, David

AU - Kawchak, Deborah

AU - Seidman, Christa

AU - Romero, Rene

AU - Karpen, Saul

AU - de la Cruz-Tracy, Liezl

AU - Hunt, Kelsey

AU - Subbarao, Girish

AU - Klipsch, Ann

AU - Munson, Sarah

AU - Kelly, Susan

AU - Rosenthal, Philip J.

AU - Fleck, Shannon

AU - Leonis, Mike A.

AU - Bucuvalas, John

AU - Horning, Tracie

AU - Baez, Norberto Rodriguez

AU - Montanye, Shirley

AU - Cowie, Margaret

AU - Horslen, Simon P.

AU - Murray, Karen

AU - Young, Melissa

AU - Nielson, Heather

AU - Klein, Jani

AU - Rudnick, David A.

AU - Shepherd, Ross W.

AU - Harris, Kathy

AU - Karpen, Saul J.

AU - De La Torre, Alejandro

AU - Dell Olio, Dominic

AU - Kelly, Deirdre

AU - Lloyd, Carla

AU - Lobritto, Steven J.

AU - Bakhsh, Sumerah

AU - Jonas, Maureen

AU - Elifoson, Scott A.

AU - Raza, Roshan

PY - 2018/5/1

Y1 - 2018/5/1

N2 - Objective: To determine health-related quality of life (HRQoL) and neurocognitive impairment in survivors of pediatric acute liver failure (PALF). Study design: A longitudinal prospective study was conducted. At 6 and 12 months after PALF presentation, surveys of HRQoL were completed for 2- to 19-year-olds and executive functioning for ages 2-16 years. At 12 months, patients 3-16 years of age completed neurocognitive testing. HRQoL scores were compared with a healthy, matched sample. Neurocognitive scores were compared with norms; executive functioning scores were examined categorically. Results: A total of 52 parent-report HRQoL surveys were completed at 6 months, 48 at 12 months; 25 patients completed neurocognitive testing. The median age at 6 months was 7.9 years (range 3.5-15.0), and final diagnosis was indeterminate for 46.2% (n = 24). Self and parent-report on Pediatric Quality of Life Inventory Generic and Multidimensional Fatigue scales fell below the healthy sample at 6 months and 12 months (almost all P <.001). Children reported lower mean scores on cognitive fatigue at 12 months (60.91 ± 22.99) compared with 6 months (73.61 ± 27.49, P =.006). The distribution of Behavior Rating Inventory of Executive Function scores was shifted downward on parent-report (preschool) for all indices at 6 months (n = 14, P ≤.003); Global Executive Composite and Emergent Metacognition at 12 months (n = 10, P =.03). Visual Motor Integration (VMI-6) Copying (mean = 90.3 ± 13.8, P =.0002) and VMI-6 Motor Coordination (mean = 85.1 ± 15.2 P =.0002) fell below norms, but full scale IQ (Wechsler Scales) and Attention (Conners’ Continuous Performance Test) did not. Conclusions: Survivors of PALF appear to show deficits in motor skills, executive functioning, HRQoL, and evidence for worsening cognitive fatigue from 6 to 12 months following PALF presentation.

AB - Objective: To determine health-related quality of life (HRQoL) and neurocognitive impairment in survivors of pediatric acute liver failure (PALF). Study design: A longitudinal prospective study was conducted. At 6 and 12 months after PALF presentation, surveys of HRQoL were completed for 2- to 19-year-olds and executive functioning for ages 2-16 years. At 12 months, patients 3-16 years of age completed neurocognitive testing. HRQoL scores were compared with a healthy, matched sample. Neurocognitive scores were compared with norms; executive functioning scores were examined categorically. Results: A total of 52 parent-report HRQoL surveys were completed at 6 months, 48 at 12 months; 25 patients completed neurocognitive testing. The median age at 6 months was 7.9 years (range 3.5-15.0), and final diagnosis was indeterminate for 46.2% (n = 24). Self and parent-report on Pediatric Quality of Life Inventory Generic and Multidimensional Fatigue scales fell below the healthy sample at 6 months and 12 months (almost all P <.001). Children reported lower mean scores on cognitive fatigue at 12 months (60.91 ± 22.99) compared with 6 months (73.61 ± 27.49, P =.006). The distribution of Behavior Rating Inventory of Executive Function scores was shifted downward on parent-report (preschool) for all indices at 6 months (n = 14, P ≤.003); Global Executive Composite and Emergent Metacognition at 12 months (n = 10, P =.03). Visual Motor Integration (VMI-6) Copying (mean = 90.3 ± 13.8, P =.0002) and VMI-6 Motor Coordination (mean = 85.1 ± 15.2 P =.0002) fell below norms, but full scale IQ (Wechsler Scales) and Attention (Conners’ Continuous Performance Test) did not. Conclusions: Survivors of PALF appear to show deficits in motor skills, executive functioning, HRQoL, and evidence for worsening cognitive fatigue from 6 to 12 months following PALF presentation.

KW - cognition disorders

KW - cognitive fatigue

KW - executive functioning

KW - pediatric liver disease

KW - pediatric liver transplantation

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