Needham et al (1) have called for a “paradigm shift” in relation to the management of long-term patient outcomes in their landmark article on post-intensive care syndrome (PICS), the constellation of new physical, psychosocial, and cognitive impairments that patients may experience after discharge. They argue that intensive care personnel should embrace the need to extend their roles to include follow-up provision, as survival rates continue to improve and new morbidities are uncovered.

As the knowledge base regarding critical care outcomes grows, so too does the moral imperative to make good use of this new information (2). Routine collection of outcome data facilitates timely research on particular subpopulations with newly diagnosed diseases, as illustrated in a recent study of Multisystem Inflammatory Syndrome in Children in pediatric patients following COVID-19 infection (3). In addition, feedback from intensive care survivors about longer-term impacts of potentially modifiable factors during their acute treatment can be the stimulus for important modifications to existing medical protocols. The concept of survivorship, although relatively new to intensive care, is widely acknowledged in other specialties such as oncology, where “late effects” follow-up clinics are commonplace (4), and where the collection of outcome data has led to important modifications in acute practice, for example, in relation to the association found between total body irradiation and cognitive deficits in younger children (5).

Outcome data can also be used to inform the systematic screening of patients at risk of developing impairments, in the interests of facilitating timely intervention post-discharge. Consensus is developing in adult ICU (6) and PICU (7) settings on the core elements of PICS (and PICS-pediatrics [PICS-p] [8]) and how best to measure these. However, the evidence base for follow-up clinics is still evolving (9) with only a few pediatric units currently offering routine follow-up (10).

In this context, this issue of Pediatric Critical Care Medicine includes a welcome addition to the literature in the form of a article by Williams et al (11) describing two PICU follow-up programs, based at Portland, Oregon and St Louis, Missouri in the United States. The authors describe the clinical practice of their multidisciplinary follow-up teams with school-aged children known to be at increased risk of cognitive impairment, as a result of acquired brain injury. This includes the use of an abbreviated neuropsychological battery of tests and builds on their initial experience of follow-up with this group, described in 2017 (12). Both programs provide continuity of care in that, as well as providing neurocognitive assessment 4 weeks after PICU discharge, they engage with families during admission and have developed good working relationships with other hospital specialties involved in their aftercare, as well as educational and other services in the community. By working collaboratively, they demonstrate that they can mobilize appropriate educational support in a timely way and thereby facilitate a smoother reentry to school for their patients after discharge. The two services differ slightly in terms of case-mix and skill-mix, with one directly employing a dedicated school liaison worker, but they both use similar neuropsychological batteries. They also have the same goals, namely to identify impairments early and to provide useful professional advice to family and school, rather than waiting for a referral much later on, when the child has come to notice because they have fallen behind their peers academically.

Their pooled assessment findings, collected over a 4-year period at these two centers, indicate that a significant proportion of this “at-risk” group were found to have new neurocognitive problems on screening, with 48% exhibiting new emotional/behavioral problems and 57% requiring referral on for further neuropsychological assessment.

Interestingly, the data suggest that some of the cognitive difficulties the children were exhibiting appear to have been initially misinterpreted as primarily emotional or behavioral by parents. This may well have been related to the high rates of difficulties found regarding executive functioning, which as the authors point out, can be associated with frustration and mood changes, as well as problems with following instructions and planning. Working memory and processing speed were also often found to be impaired, with direct implications for day-to-day cognitive tasks in the classroom. Furthermore, in over 80% of cases the team were able, in the light of the assessment findings, to provide useful guidance and specific recommendations to families and schools regarding support strategies that could be employed in the home and school context, as the child recovered. Professional recommendations included referral for speech and language therapy, occupational therapy, and physiotherapy; advice on auditory supports and assisted technology; and extra time for tests and more rest breaks during the school day.

The size of the pooled sample and the range of conditions seen in this combined group were significant strengths of the study by Williams et al (11) and the abbreviated neuropsychological battery used will be of interest to other services, given that this assessment took 1 hour as opposed to the more usual 4 or more hours required for a full neuropsychological assessment. A more general PICU follow-up clinic might also consider using many of the other measures described. However, the resources required for this degree of specialist testing, consultation and post-discharge liaison will likely not be warranted for other PICU survivors without obvious neurologic sequelae.

Two other promising examples of PICU follow-up service structures have been recently described in the literature. They both make use of bespoke online screening platforms and assess parental psychosocial functioning as well as child neurodevelopmental outcomes. The first of these, based at the Emma Children’s Hospital in Amsterdam (13), is headed up by an intensivist and a psychologist, who have the option of involving other hospital specialties and referring on for neuropsychological assessment, if needed.

Another model of PICU follow-up care is also currently being piloted in Australia. The Shared Care Model for Detecting Neurodevelopmental Impairments after Critical Illness in Young Children (DAISY) model (14) is exploring the potential added value of shared care with the child’s primary carer, in relation to screening and monitoring children between 2 months and 4 years old and their families, in the 6 months following PICU discharge. Parent-directed screening, with the added provision of information about PICS-p, is also being provided in the DAISY study (14) by way of a comparison to shared care. If found to be effective, both these modes of follow-up service delivery may represent a better use of resources than a centralized hospital-based clinic. They may also be better suited to families who live a long way from the base hospital, although remote teleclinics are another option, which the Amsterdam team use in combination with the offer of in-person outpatient consultation where indicated (13).

Construction-related metaphors abound in the literature on intensive care follow-up—we are exhorted to extend critical care “beyond walls” (15) and assured that “if we build it, they will come” (12)—but what the study by Williams et al (11) shows is that it is not enough to develop new follow-up structures in isolation. It is important also to “build bridges,” in the sense of sharing the findings of acute post-PICU assessment with other hospital specialties involved and with educational services, in order to ensure the delivery of tailored educational support in the community after discharge.

Williams et al (11) have shown that the prevalence of new impairments in this at-risk subgroup of PICU survivors justifies this new follow-up provision. They have also demonstrated that, with the appropriate resources and staffing skill-mix, follow-up services can usefully share outcome information in the best interests of the child, with the aim of optimizing their quality of life. Hopefully, in time, similar approaches will be adopted and developed further by other units to serve the PICU population more widely, in order to ensure that all their PICS-p related needs are screened for routinely and met in a more systematic way after discharge.

1. Needham DM, Davidson J, Cohen H, et al.: Improving long-term outcomes after discharge from intensive care unit: Report from a stakeholders’ conference. Crit Care Med. 2012; 40:502–509 2. Butt W: Outcome measures after ICU-what now? Pediatr Crit Care Med. 2019; 20:778–779 3. Otten MH, Buysse CMP, Buddingh EP, et al.: Neurocognitive, psychosocial, and quality of life outcomes after multisystem inflammatory syndrome in children admitted to the PICU. Pediatr Crit Care Med. 2023; 24:289–300 4. Brown SM, Bose S, Banner-Goodspeed V, et al.; Addressing Post Intensive Care Syndrome 01 (APICS-01) study team: Approaches to addressing post-intensive care syndrome among intensive care unit survivors. A narrative review. Ann Am Thorac Soc. 2019; 16:947–956 5. Levy JMM, Tello T, Giller R, et al.: Late effects of total body irradiation and hematopoietic stem cell transplant in children under 3 years of age. Pediatr Blood Cancer. 2013; 60:700–704 6. Mikkelsen ME, Still M, Anderson BJ, et al.: Society of Critical Care Medicine’s international consensus conference on prediction and identification of long-term impairments after critical illness. Crit Care Med. 2020; 48:1670–1679 7. Fink EL, Maddux AB, Pinto N, et al.; Pediatric Outcomes STudies after PICU (POST-PICU) Investigators of the Pediatric Acute Lung Injury and Sepsis Investigators (PALISI) Network and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN): A core outcome set for pediatric critical care. Crit Care Med. 2020; 48:1819–1828 8. Manning JC, Pinto NP, Rennick JE, et al.: Conceptualizing post intensive care syndrome in children-the PICS-p framework. Pediatr Crit Care Med. 2018; 19:298–300 9. Schofield-Robinson OJ, Lewis SR, Smith AF, et al.: Follow-up services for improving long-term outcomes in intensive care unit (ICU) survivors. Cochrane Database Syst Rev. 2018; 11:CD012701 10. Hickey E, Johnson T, Kudchadkar SR, et al.: Persistence matters! Hurdles and high points of PICU follow-up clinic. Pediatr Crit Care Med. 2022; 23:e397–e399 11. Williams CN, Hall TA, Baker VA, et al.: Follow-Up After PICU Discharge for Patients With Acquired Brain Injury: The Role of an Abbreviated Neuropsychological Evaluation and a Return-to-School Program. Pediatr Crit Care Med. 2023; 24:807–817 12. Williams CN, Kirby A, Piantino J: If you build it, they will come: Initial experience with a multi-disciplinary pediatric neurocritical care follow-up clinic. Children (Basel). 2017; 4:83 13. de Sonnaville ESV, van Woensel JBM, van Goudoever JB, et al.; Emma Children’s Hospital Amsterdam UMC Follow Me Program Consortium: Structured multidisciplinary follow-up after pediatric intensive care: A model for continuous data-driven health care innovation. Pediatr Crit Care Med. 2023; 24:484–498 14. Trenchard-Turner N, Desai N, Metaxa V: Critical care outreach teams: A service without walls. Intensive Care Med. 2023; 49:572–574 15. Long D, Gibbons K, Dow B, et al.: 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. BMJ Open. 2022; 12:e060714