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. 2021 May 1;22(5):e302-e313.
doi: 10.1097/PCC.0000000000002606.

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

Kathleen L Meert  1 , Ron W Reeder  2 , Aline B Maddux  3 , Russell Banks  2 , Robert A Berg  4 , Christopher J Newth  5 , Mark W Hall  6 , Michael Quasney  7 , Joseph A Carcillo  8 , Patrick S McQuillen  9 , Peter M Mourani  3 , Ranjit S Chima  10 , Richard Holubkov  2 , Samuel Sorenson  2 , Julie McGalliard  11 , J Michael Dean  2 , Jerry J Zimmerman  12 ; Life After Pediatric Sepsis Evaluation (LAPSE) Investigators; following is a summary of LAPSE Performance Sites, Principal Investigators (PIs), Coinvestigators (CIs), Research Coordinators (RCs), and Allied Research Personnel
Collaborators, Affiliations

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

Kathleen L Meert et al. Pediatr Crit Care Med. .

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.

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Conflict of interest statement

Drs. Meert’s, Reeder’s, Berg’s, Hall’s, Mourani’s, Holubkov’s, and Dean’s institutions received funding from the National Institutes of Health (NIH). Drs. Meert’s, Reeder’s, Maddux’s, Banks’s, Berg’s, Newth’s, Hall’s, Carcillo’s, McQuillen’s, Mourani’s, Chima’s, Holubkov’s, Sorenson’s, Dean’s, and Zimmerman’s received support for article research from the NIH. Drs. Maddux’s, Banks’s, Carcillo’s, McQuillen’s, Sorenson’s, and Zimmerman’s institutions received funding from the National Institute of Child Health and Human Development. Dr. Maddux’s institution received funding from Francis Family Foundation (Parker B Francis Fellowship). Drs. Banks and Sorenson disclosed government work. Dr. Newth received funding from Philips Research North America and Hamilton Medical AG. Dr. Hall received funding from La Jolla Pharmaceuticals. Dr. Holubkov received funding from Pfizer (Data Safety and Monitoring Board [DSMB]), Physicians Committee for Responsible Medicine (biostatistical consulting), Medimmune (DSMB), DURECT Corporation (biostatistical consulting), and REVANCE (DSMB). Dr. McGalliard disclosed work for hire. Dr. Zimmerman’s institution received funding from Immunexpress and Elsevier Publishing (royalties), and he received funding from the Society of Critical Care Medicine (travel reimbursment). Dr. Quasney disclosed that he does not have any potential conflicts of interest.

Figures

Figure 1.
Figure 1.
Trajectory of Stein-Jessop Functional Status II-R Short Form (FS II-R) Scores at pre-illness baseline, day 7, and month 1, 3, 6 and 12 following PICU admission for community-acquired septic shock in children perceived by family caregiver to have pre-existing severe developmental disability. For each time point, median [Q1, Q3] is displayed as a box with Q1 – (1.5 x IQR) and Q3 + (1.5 X IQR) as lines below and above each box. The diamond in the box is the mean. Circles outside the box are outliers. Asterisks represent a statistically significant difference (p<0.01) from pre-illness baseline.
Figure 2.
Figure 2.
Radar plot of Stein-Jessop Functional Status II-R Short Form (FS II-R) Item Scores at pre-illness baseline, Month 3 and Month 12 following PICU admission for community-acquired septic shock in children perceived by family caregiver to have pre-existing severe developmental disability. Each spoke represents an FSII-R item. The length of the spoke is the mean for the item. Item scores were linearly transformed to a 0-100 scale and negative items were reverse scored so that higher scores for all items indicate better wellbeing.
See this image and copyright information in PMC

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