Being Present After Pediatric Critical Illness—Home and Hospital, School and Work

Pediatric critical illness can be highly disruptive, both during and after admission to a pediatric intensive care unit (PICU). The study by Carlton et al¹ provides an important advance in the knowledge about the consequences of critical illness for patients, their siblings, and their caregivers. Carlton et al¹ report a secondary analysis of data from the Randomized Evaluation of Sedation Titration for Respiratory Failure (RESTORE) cluster randomized clinical trial of protocolized sedation vs usual care for children with respiratory disease receiving mechanical ventilation. The study enrolled 960 of 1330 children who survived to hospital discharge, as well as their 960 primary caregivers, 773 secondary caregivers, and 1559 siblings. The main outcome was missed days of work for adults, or missed days of school in discharged children and their siblings. Absences after hospital discharge were estimated from reports of the period ending 6 months after PICU discharge.

Carlton and colleagues¹ found that after hospital discharge, 70% of children were absent from a preschool, daycare, or school at which they were previously enrolled. These absences were for a median (IQR) of 16.9 (7.9-43.9) days and are in addition to a median hospital length of stay of 2 weeks (10 school days) and any prehospital absences. Other studies have reported annual school absences of 8 to 14 days in children with special health care needs, and 7.5 days in children without chronic conditions.^2,3

For caregivers, work disruption was common and correlated with the duration of school absence in patients, most likely reflecting caregiver burden after critical illness.⁴ Among primary caregivers who were employed, absences from work were for a median (IQR) of 10 (4-20) days during the inpatient stay, and the 55% of caregivers who missed work after hospital discharge were absent for a median (IQR) of 8 (4-20) additional days. Overall, secondary caregivers who were employed were absent about half as much as the primary caregivers. Implications for productivity and lost income are significant and warrant more focused study.

For children, school absence can adversely impact the development of academic skills (eg, reading, writing, numeracy, critical thinking), curriculum knowledge (eg, content from history, geography, and English classes), and social and emotional functioning.⁵ Chronic absenteeism, defined as missing 15 or more days of the approximately 180-day school year, is reported in 6.5 million (13%) US children each year and is associated with reduced school performance, diminished future educational success, and worse economic outcomes.⁵ These associations are potent reminders of the relevance of education.

The findings of Carlton et al¹ that 38% of discharged children met criteria for chronic school absenteeism and that 1 in 6 of the children studied were absent from school for more than 8 weeks after hospital discharge lead to unanswered questions about school performance and the temptation to extrapolate from population data. In the education literature, single-year absence data are cited frequently. In reality, long-term outcomes are mediated by socioeconomic factors that influence many forms of school engagement, usually over many years. It is possible that students with a single episode of critical illness and prolonged school absence may recover with a 2- to 3-week intensive catch-up intervention, as reported in students with observed decrements over the 2- to 3-month summer vacation.⁶ Of course, such interventions must be provided to confer benefit. It seems likely that students with both critical illness and unfavorable socioeconomic risk profiles are at risk of worse educational outcomes. Additional research is needed.

Being present in the current era is more nuanced than at the time of the RESTORE study, which was completed in 2015. Neither physical or virtual presence guarantee cognitive presence or academic benefit from attending school. Findings that 11% of children had decrements from normal functioning before PICU and that 28% of children were readmitted to hospital underscore the reality of post-ICU syndrome.⁷ Transient deficits in cognitive capacity associated with critical illness or its treatment may limit a child’s ability to attend to lessons and complete school assignments. Anxiety, posttraumatic stress disorder, and other psychological disturbances may limit the value of additional school time and adversely impact a child’s social and emotional functioning.

PICU admission can also be part of a journey to improved quality of life, academic performance, and social skills. Examples include children with conditions treated by elective surgery, organ transplantation, and those more urgently admitted with short-term complications of curative chemotherapy. These children might have an improved baseline after PICU rather than the decrements anticipated in patients with unplanned or urgent PICU admission reported by Carlton et al.¹ More inclusive enrollment in future studies would help describe the range of patient and student outcomes associated with PICU admission.

Meanwhile, the data provided by Carlton and colleagues¹ serve to remind us that return to school is an important functional outcome for children and parents alike. From the health care perspective, it is unfortunate that none of the factors Carlton et al¹ found were associated with more absences (ie, pre-PICU admission morbidities and functional impairment, length of PICU stay, and older patient age) are inherently modifiable, and the protocolized sedation tested in the parent trial was not beneficial. From the educational perspective, the presence of 1 or more of these risk factors may enable identification of children for preemptive screening and educational interventions after PICU discharge.

Evaluation of academic skills and emotional functioning after hospitalization with standardized assessment tools could help classroom teachers, school psychologists, speech and language pathologists, and others understand a student’s learning needs and psychological distress after critical illness. Targeted interventions could then be used to help students ameliorate the learning loss that developed during hospitalization and reintroduce themselves into school. Transition programs for patients returning to being students might include guidance about how to talk to peers about absences while they were hospitalized and managing social disconnection. School psychologists and social workers could provide therapeutic support for psychological distress.

The study by Carlton and colleagues¹ improves our understanding of one of the more pragmatic aspects of post-ICU syndrome. Cross-disciplinary collaboration between scientists in health care and education will be important in the quest to identify interventions that that minimize occurrence or mitigate the adverse consequences of critical illness and its treatment. This is a laudable goal and a credible opportunity. May the good work continue.

Published: December 23, 2021. doi:10.1001/jamanetworkopen.2021.40902

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Parshuram CS et al. JAMA Network Open.

Corresponding Author: Christopher S. Parshuram, MBChB, DPhil, Paediatric Intensive Care Unit, Critical Care Program, Hospital for Sick Children, 555 University Ave, Toronto, ON M5G1X8, Canada (christopher.parshuram@sickkids.ca).

Conflict of Interest Disclosures: Dr Parshuram reported owning shares in a decision support company partly owned by the Hospital for Sick Children. No other disclosures were reported.