1. Health-Related Quality of Life After Community-Acquired Septic Shock in Children With Preexisting Severe Developmental Disabilities
- Author
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Emily Stock, Yensy Zetino, Carolann Twelves, C. J. Jayachandran, Christopher J. L. Newth, Richard Holubkov, James W. Varni, Courtney Merritt, Lisa Steele, Ashley Wolfe, Ann Pawluszka, Mark W. Hall, Teresa Liu, Jeni Kwok, Michael J. Bell, Ranjit S. Chima, Murray M. Pollack, Elyse Tomanio, Samuel Sorenson, Hector R. Wong, Melanie Lulic, Erin Sullivan, Anil Sapru, Toni Yunger, Neda Ashtari, Robert A. Berg, Erin Stoneman, Michael W. Quasney, Andrew J. Yates, Todd C. Carpenter, Laura Benken, J. Carcillo, Aline B Maddux, Kathleen L. Meert, Kristi Flick, Anna E. Ratiu, Stephanie Bisping, Catherine Chen, Maggie Flowers, Whit Coleman, Diane Hession, Kelli A. Krallman, Jerry J. Zimmerman, John T. Berger, Rick Harrison, Deana Rich, Amy Yamakawa, Sabrina M. Heidemann, Athena F. Zuppa, Ruth Grosskreuz, Alan Abraham, Anne McKenzie, Josey Hensley, Wren Haaland, Patrick S. McQuillen, J. Michael Dean, Angie Webster, Peter M. Mourani, Jeri Burr, Diane Ladell, Kathryn B. Whitlock, Thomas P. Shanley, Andrew Nicklawsky, Alle Rutebemberwa, Joseph A. Carcillo, Ron W Reeder, Leighann Koch, David L. Wessel, Mary Ann DiLiberto, Derek Salud, Yamila Sierra, Julie McGalliard, and Russell Banks
- Subjects
Pediatrics ,medicine.medical_specialty ,Adolescent ,Developmental Disabilities ,Psychological intervention ,Critical Care and Intensive Care Medicine ,Article ,Sepsis ,Quality of life ,medicine ,Humans ,Child ,Health related quality of life ,Family caregivers ,business.industry ,Septic shock ,Single parent ,medicine.disease ,Shock, Septic ,Caregivers ,Shock (circulatory) ,Pediatrics, Perinatology and Child Health ,Quality of Life ,medicine.symptom ,business - 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.
- Published
- 2020