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

Abstract

Objectives: 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.

Design: Secondary analysis of prospective cohort study.

Setting: Urban, tertiary, academic PICU.

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

Interventions: None.

Measurements and main results: 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).

Conclusions: 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.