Transitions from short to long-term outcomes in pediatric critical care: considerations for clinical practice

Abstract

Most children are surviving critical illness in highly resourced pediatric intensive care units (PICUs). However, in research studies, many of these children survive with multi-domain health sequelae that has the potential to affect development over many years, termed post-intensive care syndrome-pediatrics (PICS-p). Clinically, there are no recommendations for the assessment and follow-up of children with critical illness as exists for the premature neonatal and congenital heart disease populations. In research studies, primary and secondary outcomes are largely assessed at or prior to hospital discharge, disregarding post-hospital outcomes important to PICU stakeholders. Incorporating longer term outcomes into clinical and research programs, however, can no longer be overlooked. Barriers to outcomes assessments are varied and generalized vs. individualized, but some PICU centers are discovering how to overcome them and are providing this service to families-sometimes specific populations-in need. Research programs and funders are increasingly recognizing the value and need to assess long-term outcomes post-PICU. Finally, we should seek the strong backing of the PICU community and families to insist that long-term outcomes become our new clinical standard of care. PICUs should consider development of a multicenter, multinational collaborative to assess clinical outcomes and optimize care delivery and patient and family outcomes. The aim of this review is to present the potential considerations of implementing long-term clinical follow-up following pediatric critical illness.

Keywords: Child; critical care; family; outcome assessment; post intensive care syndrome.

Figure 1

Modified Post-Intensive Care Syndrome – pediatrics (PICS-p) framework. Adapted with permission Wolters Kluwer Health, Inc.: Manning et al., 2018, Pediatric Critical Care Medicine (21). *, social determinants of health include concepts such as poverty, access to healthcare and community services, food security, neighborhood and environment, housing, and access to education. ^#, parents include guardians, caregivers, and kin. ^, communication with parents, treating teams and other relevant healthcare providers, including pediatricians, general practitioners, and allied health professionals currently providing care for child. MDT, multidisciplinary team.

Figure 2

Considerations for implementing PICU Follow-Up. Adapted from Pavoni et al., 2020, ICU Management & Practice (34). ECMO, extracorporeal membrane oxygenation; CVVH, Central Veno-Venous Haemofiltration; COS, Core Outcome Set; COMS, Core Outcome Measure Set; PICS-p, Post Intensive Care Syndrome-pediatrics; HRQoL, Health Related Quality of Life.