Association of Real-Time Reports of Child Status With Functional Outcomes After Critical Illness

Introduction: Children with chronic respiratory technology dependence (CRTD), including home oxygen or mechanical ventilation, are at risk for post-ICU morbidity. We hypothesized that children whose families reported more problematic early post-hospital recovery trajectories would have worse overall function at 3 month follow up.


Methods: Families of children with CRTD whose child had >24 hours of ICU stay were recruited for prospective, long-term follow up via standard survey instruments and custom ecological momentary assessment (EMA) surveys. Families completed EMA surveys up to 4x/day for the first week following hospital discharge, providing real-time assessment of the child’s mood, energy, and respiratory support needs. Functional outcomes were measured using the Functional Status Scale (FSS), which has six subdomains to reflect areas of child functioning. Days in the hospital in the 3 months after discharge was assessed via manual chart review. Linear regressions were performed to assess the relationship between EMA data and early post-hospital recovery and change in 3 month FSS subdomain differences from baseline. Data are presented as median (IQR) unless otherwise stated.


Results: 27 participants had adequate EMA data and FSS scores. Child age at enrollment was 4.4 years (1.5-10.1). 56% were female. Severity of illness, as measured by PRISM III, was 0 (0-3). Total FSS at baseline (reflecting pre-illness status) was 15 (10-16). Median change in total FSS at 3 months was 0 (0-0, range -1-1), true of all subdomains. Better reported child mood was associated with worsening child sensory subdomain score (coeff 0.2839, p=0.021) and improved FSS respiratory subdomain score (-0.41003, p=0.033). No queried EMA data was significantly associated with change in the FSS motor, feeding, or mental status subdomain scores. Children spent a median of 0 days in the hospital in the 3 months following discharge (0-3, range 0-9). Parental-reported respiratory support needs were not associated with days in the hospital in the 3 months following discharge.


Conclusions: Family-reported assessments of a child’s clinical status in the first week after hospital discharge are associated with change in FSS subdomain scores 3 months after discharge, but not days in the hospital during the same time period.