Post-PICU Outcome: What We Now Know About the Chronology of PICU Survivorship and General Health Recovery

The November 2022 report about a Core Outcome Measurement Set (COMS) for children surviving intensive care provided Pediatric Critical Care Medicine (PCCM) with a multidisciplinary, international, expert-defined, consensus-based framework to better understand and characterize post-PICU general recovery (1). This report incorporated prior work on Post-Intensive Care Syndrome–Pediatrics (PICS-p) and the Core Outcome Set (COS) for pediatric critical care outcomes research (2,3). Thus, the 2022 COMS framework integrated measurement tools into four clinical themes: the child with PICS-p in the context of the family and their PICU experience; the developmental impact of any consequence of illness on the child’s physical, cognitive, emotional and social health; the child’s ongoing overall health; and the family’s health. The editorial (4) accompanying the COMS report (1) anticipated that the tools for measuring overall and general health outcomes would be incorporated into future studies of PICU survivorship. Therefore, this PCCM Editor’s Notes article is written with the purpose of reflecting on some publications since 2022 that focus on components of the combined PICS-p, COS, and COMS framework. Here, the information is organized according to the chronology of post-PICU survivorship, covering early (1- to 2-mo and 3- to 9-mo) and late (12-mo and longer) post-PICU outcomes. EARLY, 1- TO 2-MONTHS POST-PICU OUTCOMES There are nine studies that reported observations in the 1- to 2-months after PICU discharge (Table 1). Two single-center reports focused on parents or caregivers: one study looked at parental adverse childhood experiences (ACEs) and the prevalence of post-PICU posttraumatic stress disorder (PTSD) (5); and the other study described the change in parent or caregiver postdischarge employment (6). Table 1. - Chronology of Post-PICU Outcomes Post-PICU (Reference) Years of Cohort Centers (Population) Child Age Topic or Subject Outcomes Early, 1- to 2-mo post-PICU outcomes 1 mo (5) 2021 1 PICU(child/parent; 145) 2−18 yr Adverse childhood experiences in parent (≥ 2 d PICU) Parental PTSD 1 mo (6) 2018−2021 1 PICU(child/parent; 123) ≥ 1 mo, ≤18 yr ≥ 3 d IMV Caregiver employment 28 d (7) 2014−2017 12 PICUs(child; 389) <18 yr Social determinants of health and LAPSE, post-sepsis HRQL 1 mo (8) 2014−2017 12 PICUs(child; 293) 1 mo−18 yr Fluid balance and LAPSE, post-sepsis HRQL 1 mo (9) 2019 1 PICU(child; 117) PICU cases Rehab bundle in PICU > 48 hr HRQL 1 mo (10) 2016−2023 1 PICU(child; 455) 3−19 yr Child opportunity index and acute brain injury Disability 1 mo (11) 2021−2022 1 PICU(child/parent; 135) 1 mo−18 yr ≥ 2 d PICU 1-OD QOL, FSS. PTSS 6 wk (12) 2011−2017 1 PICU(child; 315) 1 mo−18 yr Pediatric acute respiratory distress syndrome HRQL 2 mo (13) 2018−2021 1 PICU(child; 153) < 18 yr ≥ 2 d IMV or ≥ 4 d noninvasive ventilation HRQL Early, 3- to 9-mo post-PICU outcomes 3 mo (9) 2019 1 PICU(child; 117) PICU cases Rehab bundle in PICU > 2 d HRQL 3 mo (14) 2014−2017 12 PICUs(child; 385) 1 mo−18 yr Desirability of outcomes ranking scale and LAPSE, post-sepsis HRQL 3 mo (15) 2014−2017 12 PICUs(child; 224) 1 mo−18yr ΔFSS and LAPSE, post-sepsis HQRL 3-6 mo (16) 2020−2021 7 PICUs(child; 49) 0−17 yr Multisystem inflammatory syndrome in children E, B, PTSD, HRQL, NC 3-6 mo (11) 2021−2022 1 PICU(child/parent; 135) 1 mo−18 yr ≥ 2 d PICU 1-OD QOL, FSS, PTSS 6 mo (17) 2009-2013 31 PICUs(child; 102) > 8 yr RESTORE, acute respiratory failure PTSD, HRQL, NC 6 mo (18) 2009-2013 31 PICUs(child; 232) < 2 yr RESTORE, bronchiolitis IMV F, QOL 3-9 mo (19) 2016-2020 1 PICU(parent; 195) 0−17 yr ≥ 2 d PICU FSS, PTSD, PTSS Late, 12-mo and longer, post-PICU outcomes 12 mo (6) 2018−2021 1 PICU(child/parent; 115) ≥ 1 mo, ≤ 18 yr ≥3d IMV Caregiver employment 12 mo (15) 2014−2017 12 PICUs(child; 224) 1 mo−18 yr ΔFSS & LAPSE, post-sepsis HRQL 1.6 yr (median) (20) 2014−2020 1 PICU(child; 40) < 18 yr Extracorporeal membrane oxygenation F, HRQL, 18-30 mo (19) 2016−2020 1 PICU(parent; 175) 0−17 yr ≥ 2 d PICU FSS, PTSD, PTSS 2.5 yr (average) (21) 2007−2017 1 PICU(child; 104) PICU cases Cases of acute lymphoblastic leukemia NC, F, E 1 and 3 yr (22) 2014−2018 3 PICUs(child/parent; 30) 3−12 yr ≥ 1 d PICU E, B, PSI, anxiety 8.7 yr(average) (23) 2004−2008 + 8 PICUs(child; 572) CICU cases Infant cardiac surgery for congenital heart disease cases QOL 1-OD = one organ dysfunction, B = behavior, E = emotion, F = functional, FSS = functional status score, HRQL = health-related quality of life, IMV = invasive mechanical ventilation, LAPSE = life after pediatric sepsis evaluation, QOL = quality of life, Rehab = rehabilitation, RESTORE = randomized evaluation of sedation titration for respiratory failure clinical trial, ΔFSS = change in FSS. The other seven studies included multicenter (7,8) and single-center (9–13) PICU populations. Four of these focused on PICU admissions with specific high-risk conditions, such as severe sepsis and septic shock (7,8), acute brain injury (10), and pediatric acute respiratory distress syndrome (PARDS) (12). And the other three used a more general inclusion, i.e., needing invasive mechanical ventilation for longer than 2 days (11,13), or when admission was going to be longer than 2 days (9). Regarding outcomes, the emphasis was on health-related quality of life (HRQL) (7–9,11–13) or function (10,11). EARLY, 3- TO 9-MONTHS POST-PICU OUTCOMES Table 1 shows the eight reports of post-PICU cohorts in which the outcomes were assessed later in the early phase of recovery, at 3- to 9-months (9,11,14–19). These included three single-center reports (9,11,19) and five reports using multicenter datasets (14–18). At the 3- to 6-month interval after PICU admission, there is a report of neurocognitive, emotional, behavioral, PTSD, and HRQL outcomes in children who had been admitted to any of seven units in The Netherlands with COVID-related multisystem inflammatory syndrome (16). Four other reports contain longitudinal data, describing information from 3- or 6-months post-PICU that add to previous information on HRQL outcomes after 1 month. There is the 2024 report from Canada about a PICU rehabilitation-implementation study, with HRQL outcomes at 1- and 3-months (9). There are two analyses of the life after pediatric sepsis evaluation (LAPSE) cohort in which more acute-care characteristics and 3-month HRQL outcomes (14,15) were added to the observations after 1 month (7,8). And, from Singapore, a single-center study describing three recovery trajectories (with associated risk of posttraumatic stress syndrome [PTSS]) based on premorbid state and functional status score and quality of life at 1-, 3-, and 6-months after PICU discharge (11). At 6-months post-PICU, there are two secondary analyses of the 31-center randomized evaluation of sedation titration for respiratory failure (RESTORE) trial dataset: one report focused on neurocognitive, PTSD, and HQRL outcomes in children older than 8 years with acute respiratory failure (17); the other report focused on cognitive, functional, and quality of life outcomes after mechanical ventilation for bronchiolitis in children younger than 2 years (18). Finally, there is one report focused on parental traumatic stress, with descriptive data about risk and prevalence of PTSS and PTSD at 3- to 9-months post-PICU (19). LATE, 12-MONTHS, AND LONGER POST-PICU OUTCOMES There are seven reports listed in Table 1 with outcome data in cohorts from 12-months to, on average, 8.7 years after PICU admission (6,15,19–23). The data extended earlier observations in the time course of survivorship and recovery in three reports. For example, the report of parent or caregiver employment 1 month after discharge from the PICU, also included the details after 12 months (6). In the LAPSE study cohort, in addition to the 1-month (7,8) and 3-months (14,15) information about HRQL, there is also HRQL outcome at 12 months (15). Third, the report of parental traumatic stress, PTSS and PTSD, at 3- to 9-months after PICU discharge (19) also included analyses at 18- to 30-months post-PICU (19). In summary, the reports of late post-PICU outcomes highlight two themes covered earlier in the chronology of survivorship. First, there is a focus on outcomes in PICU subspecialty populations, including: 1) sepsis and septic shock and HQRL 12-months later (15); 2) life-support with extracorporeal membrane oxygenation and functional survival and HRQL after a median time of 1.6 years (20); 3) acute lymphoblastic leukemia treatment and functional, emotional and neurocognitive outcomes at an average time of 2.5 years post-PICU (21); and 4) cardiac surgery during early childhood for congenital heart disease and quality of life outcomes after an average of 8.7 years (23). The second theme is about outcomes in parents and caregivers, e.g., information about employment (6), PTSD/PTSS (19), and stress and anxiety (22). NOTES The chronology of post-PICU survivorship–as presented in a number of reports published since the 2022 COMS integrated framework for general health outcomes and morbidities (5–23)–leaves us with a challenging clinical landscape. There is a significant post-PICU physical, cognitive, emotional, behavioral, and social health burden for patients and their families. (I have purposely left out the numbers–which readers can review–because any is important, but a general figure between 10% to 40% is a starting point). There is a post-PICU trajectory in potential recovery that plays out over many months, if not years. There is the question of causation: induced by disease- or illness-related pathophysiology (e.g., PARDS, COVID) versus a more general consequence of exposures during PICU management (e.g., admission ≥2 days). PCCM has addressed the above issues by publishing reader-worthy editorial material from experts in the field. For example, there is an item asking “is it time for the trauma-informed PICU” on the burden of health outcomes (24). Alternatively, there are comments on “defining optimal outcomes for clinical research and practice” (25) and “…integration of PICU follow-up with aftercare in the community” on the timing and trajectory in outcome (26). And finally, on the topic of specific etiology versus general cause of deterioration in function and general health in survivors of COVID, we can read two opinions: whether the “impaired neurocognition, quality of life and behavior… (is) a result of illness or the pandemic?” (27); and, that “oxygen is vital for (health-related quality of) life” regarding PARDS (28). Therefore, as we look to future clinical care and research aimed at improving PICU survivorship and general health recovery–beyond the important descriptions and narratives by our authors since 2022 (5–23), as well as others in the literature–there are three options that we would like to read about in PCCM. First, learning from others’ expertise and experience in systems-based approaches to improving general outcomes or mitigating PICS-p. For example, we have heard about embedding a psychologist in the PICU care team (29,30) and incorporating family-centered care (31). Also, in this issue of PCCM, we can read about a 2024 qualitative study aimed at informing the development of postsepsis care and individualized follow-up services for patients and families in Western Australia (32). What else should we learn from investigators around the world? The second option is to see whether there is any impact of following the latest practice-based, professional recommendations for evaluating and optimizing disease-related outcomes. For example, since 2022 we have learned about PARDS-related HRQL outcomes in a 2011−2017, single-center cohort (12), and the accompanying editorial provided valuable mechanistic insights (28). In the 2023 Second Pediatric Acute Lung Injury Consensus Conference (PALICC-2) guidance, there are a few good practice and research statements about outcomes assessment after PARDS based on a systematic review of literature published before 2023 (33,34). As we move forward in this area, PCCM wants to know what is happening in contemporary, post-COVID PARDS cohorts? The third option for making progress in our field is to carry out intervention trials or implementation studies of new practices. There are currently no clinical trials of interventions. However, in two reports published since 2022, there are protocols for observational longitudinal studies of PICS-p (35,36). There is also a two-center implementation study of early rehabilitation in the PICU (37), but short- and long-term patient-centered outcomes are still needed. Of note, the PCCM editorial that accompanied the rehabilitation study concluded that for complex interventions in the PICU our field should move away from randomized controlled trials and use hybrid implementation studies (38). We welcome such future work at PCCM. Finally, health outcomes in parents and caregivers of PICU patients have featured in many PCCM reports since 2022 (5,6,11,19,22). Accompanying the report on parental ACEs and post-PICU PTSD in a cohort from 2021 (5), there is an important editorial outlining risks and the utility of screening for parental ACEs in the PICU (39). As follow-up, consider the informative 2024 report of semistructured interviews carried out in 2021−2022 in a convenience sample of 11 parents at one center (40). Here, 10 of 11 participants found that screening for ACEs was acceptable and valuable in the PICU. Therefore, taking all the above together, our authors and researchers have shown us much about the four clinical themes in the COMS framework since 2022. PCCM welcomes all research in this area, and we look forward to even more progress.

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