Three-Year Follow-Up of PICU Survivors: Time Course of Neurodevelopmental Sequelae in a Single-Center Cohort, Recruited 2017-2018.

OBJECTIVES

To use a multidimensional outcomes portfolio to assess neurodevelopmental sequelae among PICU survivors during the first 3 years after hospital discharge.

DESIGN

Prospective study of a cohort recruited 2017-2018, with interval follow-up for 3 years.

SETTING

PICU at an urban academic tertiary care center.

PATIENTS: Children 0-17 years admitted to the PICU with anticipated discharge home.

INTERVENTIONS: None.

MEASUREMENTS AND MAIN

RESULTS

We evaluated outcomes using a PICU Outcomes Portfolio (POP) survey, which combined a study-specific Healthcare and Neurodevelopmental Profile and the Family Impact Survey and standardized measurement tools, including the Pediatric Quality of Life Inventory, the Strengths and Difficulties Questionnaire, and the National Institute for Children's Health Quality Vanderbilt Assessment Scales, to identify various components of post-PICU challenges. Our POP survey identified a sustained impact of child health on family finances and parental employment. Our multidimensional outcomes assessment flagged more at-risk children than individual measures of neurodevelopmental functioning.

CONCLUSIONS

Children and families face diverse challenges during recovery from critical illness. Parent-reported outcomes and a multidimensional outcomes portfolio identify the broad impact of critical illness on family well-being as well as the long-term outcomes among PICU survivors. Future mixed-methods studies incorporating parental input regarding post-discharge needs are needed to enrich the evaluation of post-PICU outcomes using standardized measures and guide the development of post-PICU follow-up programs.