Patient follow-up after discharge from the paediatric intensive care unit: A scoping review

Abstract

Background: Most children admitted to a paediatric intensive care unit (PICU) now survive because of improvements in care. Many studies have identified the psychological, functional, cognitive and social impact of PICU admission on a child and their family. However, expert recommendations on follow-up are lacking.

Aim: To identify the strategies of clinical follow-up after PICU discharge performed from 2001 to 2021.

Study design: This scoping review was undertaken between January and April 2021 using three databases: PubMed, EMBASE and CINAHL. The search strategy consisted of a combination of keywords, including PICU, post-PICU discharge and follow-up in articles published between 2001 and 2021. The results are reported according to PRISMA-ScR guidelines.

Results: Six-hundred and fifty-two articles were identified and 68 were analysed. Median age was 4.5 years and the two main reasons for PICU admission were cardiorespiratory failure and sepsis. Median length of PICU stay was 8 days. Most follow-up was carried out by research units (88%), while 6% of studies reported follow-up by a multidisciplinary PICU team. The most common follow-up schedule included an assessment at PICU discharge, and then at 3, 6 and 12 months. Follow-up for >1 year was reported in 20% of studies. One third of studies focused on follow-up quality of life and neurological outcomes. Parental emotional impact was assessed in 7% of studies.

Conclusion: Follow-up after PICU discharge was highly heterogeneous regarding timing, health care professionals involved and assessment methods. There is an urgent need for standardization and coordination of PICU follow-up because of the increasing number of patients impacted by a PICU stay.

Relevance to clinical practice: Although most patients admitted to a paediatric intensive care unit (PICU) now survive; they may develop paediatric post-intensive care syndrome (PICS-P). To our knowledge, there are currently no clinical guidelines regarding follow-up after PICU discharge. This review summarizes current approaches to follow-up after PICU discharge, including how it is carried out, who is involved and what the main aims of assessment are.

Keywords: ICU outreach/follow‐up; paediatric intensive care; post‐intensive care syndrome; psychological issues and support.

FIGURE 1

Flow chart of the search results and selection procedure.

FIGURE 2

Tools used for the follow‐up of children after PICU discharge. Pediatric quality of life scales: HUI and HUI 2–3: Health Utility Index and Health Utility Index Mark 2–3; PedsQL: Pediatric Quality of Life inventory. Neurological assessment scales: POPC‐PCPC: Pediatric Overall Performance Category–Pediatric Cerebral Performance Category; Glasgow. Behaviour scales: CBCL: Child Behavior Checklist; VABS: Vineland Adaptative Behavior Scale; ABASIII: Adaptive Behavior Assessment System; BASC2: Behavior Assessment System for Child. Functional scales: FSS: Functional Status Scale; PEDI‐CAT: Pediatric Evaluation of Disability Inventory Computer Adaptive Test; Bayley: Bayley scale of infant and toddler development. Post‐Traumatic Stress Disorder (PTSD) assessment scales: SRIP: Self‐Rating Inventory for PTSD; CPSS: Child PTSD Symptom Scale; CPTSDI: Children Post‐Syndrome Inventory; Sleep. PICU scales: PSS‐PICU: Parent's Stressor Scale‐PICU; CCIIS/Y‐CCIIS: Children's Critical Illness Impact Scale. Adaptive Behavior Assessment System (ABAS‐3); Bayley Scale of Infant Development; Behavior Assessment System for Children & 2 (BASC & BASC‐2) BASC‐2 Self Report Profile (BASC‐2 SRP); Behavioral Pediatrics Feeding Assessment Scale; Caregiver Assistance Scale (CAS); Child Feeding Questionnaire; Children's Behavior Questionnaire—very short version; Child Behavior Checklist (CBC); Children's Critical Illness Impact Scale, written version (CCIIS); Child Impact of Events Scale; Child Health Questionnaires (CHQ); Children's Hope Scale (CHS); Children's PTSD Inventory (CPTSDI); Child PTSD Symptom Scale (CPSS); Children Responses to Trauma Inventory (CRTI); Child Sleep Habits Questionnaire (CSHQ); Children and Youth (PEM‐CY); Differential Abilities Scale (DAS‐II); Family Assessment Device (FAD); Functional Status Scale (FSS); General Health Questionnaire‐28 (GHQ28); Glasgow Coma Scale; Glasgow Outcome Score (GOS); Glasgow Outcome Scale Extended Pediatrics (GOSEP); Harter Scale of Perceived Competence (Harter); Health State Classification (HSC); Health State Utility (HSU) Index; Health State Utility Index Mark 1, 2 and 3 (HUI 1–2‐3); Hospital Anxiety and Depression Scale (HADS); Impact of Event scales (IES and IES‐8); Infant Behaviour Questionnaire—very short version; Infant Feeding Questionnaire; Infant and Toddler Quality of Life Questionnaire‐97 (ITQOL); International Classification of Functioning, Disability and Health – Version for Children and Youth (ICF‐CY); Kidscreen‐27 questionnaire; Modified Glasgow Outcome Score (MGOS); Mullen Scales of Early Learning (Mullen); Multidimensional Assessment of Caring Activities (YC18); Multi Attribute Health Status Classification (MAHSC); Paediatric Asthma Quality of Life Questionnaire (PAQLQ); Parental Beliefs Scale (PBS); Parental Stress Index (PSI); Parental Stressor Scale: Paediatric Intensive Care Unit (PSS‐PICU); Participation and Environment Measure (PEM); Patient Health Questionnaire‐4; Peabody Developmental Motor Scale (PDMS‐2); Pediatric Depressive Symptoms as a Harmonized Score Metric (PROMIS); Pediatric Evaluation of Disability Inventory (PEDI); Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI‐CAT); Pediatric Overall Performance Category and Pediatric Cerebral Performance Category Scales (POPC‐PCPC); PedsQL Family Impact Module Version 2.0; PedsQL Generic Core Scales Version 4.0; PedsQL Multidimensional Fatigue Scale Version 3.0; PedsQL Pediatric Pain Questionnaire; Pediatric Quality of Life Inventory (PedsQL) Infant Scales Version 4.0; Pediatric Quality of Life Inventory, Version 4.0 (PedsQL 4.0); Positive and Negative Outcomes of Caring (YC20); Post‐Hospital Behavior Questionnaire (PBQ); Profile of Mood State (short form); PTSD Checklist−5; Royal Alexandra Hospital for Children (RAHC) Measure of Function; Self‐Rating Inventory for PTSD (SRIP); Short‐Form 36 questionnaire (SF36); Sleep Disturbance Scale for Children (SDSC); Strengths and Difficulties Questionnaires (SDQ); State–Trait Anxiety Inventory (STAI); TNO‐AZL Preschool Children Quality of Life Questionnaire (TAPQOL‐PF); TNO‐AZL Children's Quality of Life Questionnaire Parent Form (TACQOL‐PF); TNO‐AZL Children's Quality of Life Questionnaire Child Form (TACQOL‐CF); Vineland Adaptive Behavior Scale (VABS–VABS‐II); Visual Analogue Scales (VAS); Wechsler preschool and primary scale of intelligence (WASI); Wechsler Preschool and Primary Scale of Intelligence (WPPSI‐IV); Young Children's Critical Illness Impact Scale, pictorial version (Y‐CCIIS); Young Children's version (YC‐PEM); 13‐symptom list.