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.

Neurocognitive functioning and health-related quality of life of children after pediatric intensive care admission: a systematic review

“…Critical illness in children occurs at a time of growth and development and may therefore influence maturation trajectories in multiple domains [ 1 ]. This has recently been conceptualized as the internationally acknowledged post-intensive care syndrome in children (PICS-p) [ 2 ]. PICS-p covers morbidities in the following four developmental domains: physical, emotional, social, and cognitive functioning.…”

Current Knowledge Regarding Long-Term Consequences of Pediatric Intensive Care: A Staff Survey in Intensive Care Units in German-Speaking Countries

“…About one third of the respondents stated that they lacked knowledge from follow-up to be able to make statements about long-term consequences. However, it is precisely the follow-up and research of late effects that seems to be necessary in order to develop therapy concepts and to avert negative courses ( 21 ). Knowledge about risk groups makes targeted prevention and therapy possible, not least in order to be able to use the already scarce resources sensibly ( 22 , 23 ).…”

“…In order to assess the individual long-term course, it is not only necessary to provide follow-up care, but also to record the initial condition before intensive care treatment. Many patients already have an impairing underlying disease before their intensive care stay ( 7 , 21 , 24 ). About one third of pediatric patients admitted to a PICU have at least one adverse social determinant ( 25 ).…”

Effectiveness–implementation hybrid-2 randomised trial of a collaborative Shared Care Model for Detecting Neurodevelopmental Impairments after Critical Illness in Young Children (DAISY): pilot study protocol

“…(2) there is limited evidence supporting the implementation of follow-up for PICU survivors and evidence supporting objective outcomes and long-term follow-up adoption is currently lacking 69 ; and (3) with appropriate support and education, there is minimal risk in implementing parent-directed follow-up interventions. 70 The hybrid design permits important data to be collected on the transferability of evidence of effectiveness of separate elements of online screening, routine feedback and shared care in the proposed model while expediting translation of findings into clinical practice and survivor follow-up pathways.…”

“…A multicentre pilot hybrid-2 randomised effectiveness–implementation trial60 in children ≥2 months and <4 years admitted to a regional PICU will be used to simultaneously collect data on the effectiveness and implementation of the DAISY Pilot intervention. This design has been selected because: (1) there is evidence supporting the benefit of both early screening and intervention on child outcomes,19 21 24 61 and parent-directed interventions on parental stress and confidence and child outcomes34 62–68; (2) there is limited evidence supporting the implementation of follow-up for PICU survivors and evidence supporting objective outcomes and long-term follow-up adoption is currently lacking69; and (3) with appropriate support and education, there is minimal risk in implementing parent-directed follow-up interventions 70. The hybrid design permits important data to be collected on the transferability of evidence of effectiveness of separate elements of online screening, routine feedback and shared care in the proposed model while expediting translation of findings into clinical practice and survivor follow-up pathways 60…”