Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities

Kathleen L. Meert*, Ron W. Reeder, Aline B. Maddux, Russell Banks, Robert A. Berg, Christopher J. Newth, Mark W. Hall, Michael Quasney, Joseph A. Carcillo, Patrick S. McQuillen, Peter M. Mourani, Ranjit S. Chima, Richard Holubkov, Samuel Sorenson, Julie McGalliard, J. Michael Dean, Jerry J. Zimmerman, Sabrina Heidemann, Ann Pawluszka, Melanie LulicAthena Zuppa, Carolann Twelves, Mary Ann Diliberto, Murray Pollack, David Wessel, John Berger, Elyse Tomanio, Diane Hession, Ashley Wolfe, Todd Carpenter, Diane Ladell, Yamila Sierra, Alle Rutebemberwa, Ruth Grosskreuz, Andrew Yates, Lisa Steele, Maggie Flowers, Josey Hensley, Anil Sapru, Rick Harrison, Neda Ashtari, Anna Ratiu, Joe Carcillo, Michael Bell, Leighann Koch, Alan Abraham, Anne McKenzie, Yensy Zetino, Jeni Kwok, Amy Yamakawa, Thomas Shanley, C. J. Jayachandran, Hector Wong, Kelli Krallman, Erin Stoneman, Laura Benken, Toni Yunger, Catherine Chen, Erin Sullivan, Courtney Merritt, Deana Rich, Wren Haaland, Kathryn B. Whitlock, Derek Salud, Whit Coleman, Andrew Nicklawsky, Angie Webster, Jeri Burr, Stephanie Bisping, Teresa Liu, Emily Stock, Kristi Flick, James Varni

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

OBJECTIVES: To serially evaluate health-related quality of life during the first year after community-acquired septic shock in children with preexisting severe developmental disabilities and explore factors associated with health-related quality of life changes in these children. DESIGN: Secondary analysis of the Life after Pediatric Sepsis Evaluation investigation. SETTING: Twelve academic PICU in the United States. PATIENTS: Children greater than or equal to 1 month and less than 18 years old identified by their family caregiver (e.g., parent/guardian) as having severe developmental disability prior to septic shock. INTERVENTIONS: Family caregivers completed the Stein-Jessop Functional Status II-R Short Form as a measure of their child's health-related quality of life at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Stein-Jessop Functional Status II-R Short Form scores were linearly transformed to a 0-100 scale, with higher scores indicating better health-related quality of life. MEASUREMENTS AND MAIN RESULTS: Of 392 Life after Pediatric Sepsis Evaluation participants, 137 were identified by their caregiver as having a severe developmental disability. Sixteen children (11.6%) with severe disability died during the 12 months following septic shock. Among 121 survivors, Stein-Jessop Functional Status II-R Short Form scores declined from preadmission baseline to day 7 (70.7 ± 16.1 vs 55.6 ± 19.2; p < 0.001). Stein-Jessop Functional Status II-R Short Form scores remained below baseline through month 12 (59.1 ± 21.0, p < 0.001 vs baseline). After adjusting for baseline Stein-Jessop Functional Status II-R Short Form, the caregiver being a single parent/guardian was associated with lower month 3 Stein-Jessop Functional Status II-R Short Form scores (p = 0.041). No other baseline child or caregiver characteristic, or critical illness-related factors were significantly associated with month 3 Stein-Jessop Functional Status II-R Short Form scores. CONCLUSIONS: Health-related quality of life among children with severe developmental disability remains, on average, below baseline during the first year following community-acquired septic shock. Children with severe disability and septic shock that are in single parent families are at increased risk. Clinical awareness of the potential for decline in health-related quality of life among disabled children is essential to prevent this adverse outcome from being missed.

Original languageEnglish (US)
Pages (from-to)E302-E313
JournalPediatric Critical Care Medicine
DOIs
StateAccepted/In press - 2021

Keywords

  • child
  • developmental disability
  • health-related quality of life
  • infant
  • pediatric
  • sepsis
  • septic shock

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Critical Care and Intensive Care Medicine

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