Parental Perception and Measured Functional Status Following Pediatric Critical Illness: A Secondary Analysis of the...

We evaluated the concordance between parent/guardian perception of child long-term function and objectively scored long-term functional status using the Functional Status Scale (FSS) among PICU survivors.

Secondary analysis of prospective cohort study.

Urban, tertiary, academic PICU.

PICU patients less than 18 years old were admitted between June and August 2012.

None.

We conducted telephone interviews of parents/guardians of PICU survivors ( n = 77) 6 months post-PICU discharge. We asked parents/guardians to characterize their child's functional status, and we determined FSS scores using scripted interview questions. Concordance between parent/guardian perceptions and FSS scores was assessed, revealing that parent/guardian perceptions of their child's functional status aligned poorly with FSS scores at 6 months (kappa coefficient 0.16).

These findings shed light on a critical disconnect between parent/guardian perspective and our current tools to measure a child's functional status following critical illness. In an era of decreased PICU mortality and increased long-term morbidity, the discordance between parent/guardian perception and available scoring tools in the assessment of long-term functional status highlights a key opportunity to improve communication and anchor expectations for long-term outcomes among PICU survivors.