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

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.

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.

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.