originalinvestigation | criticalcaremedicine

Original Investigation | Critical Care Medicine

School and Work Absences After Critical Care Hospitalizationfor Pediatric Acute Respiratory FailureA Secondary Analysis of a Cluster Randomized TrialErin F. Carlton, MD, MSc; John P. Donnelly, PhD; Hallie C. Prescott, MD, MSc; Lisa A. Asaro, MS; Ryan P. Barbaro, MD, MSc;R. Scott Watson, MD, MPH; Martha A. Q. Curley, RN, PhD; for the RESTORE Study Investigators

Abstract

IMPORTANCE Patients who survive pediatric critical illness and their caregivers commonlyexperience physical, emotional, and cognitive sequelae. However, the rate and duration of schoolabsence among patients and work absence among their caregivers are unknown.

OBJECTIVE To determine the rates and duration of school absence among children who survivedhospitalization with acute respiratory failure and work absence among their caregivers.

DESIGN, SETTING, AND PARTICIPANTS The Randomized Evaluation of Sedation Titration forRespiratory Failure (RESTORE) cluster randomized trial included 2449 children from 31 sites toprotocolized sedation (intervention) vs usual care (control) from June 6, 2009, to December 2, 2013.In total, 1360 children survived hospitalization and were selected for follow-up at 6 months afterpediatric intensive care unit (PICU) discharge, which was completed from January 12, 2010, to April13, 2015. This secondary analysis was conducted from July 1, 2020, to September 30, 2021.

EXPOSURES PICU hospitalization for acute respiratory failure, including invasive mechanicalventilation.

MAIN OUTCOMES AND MEASURES Postdischarge assessments with caregivers of eligibleparticipants at 6 months after PICU discharge, including questions about school and work absence.Risk factors associated with longer absence from school and work were identified.

RESULTS Postdischarge assessments were completed for 960 children who survived treatment foracute respiratory failure, of whom 443 (46.1%) were girls and 517 (53.9%) were boys; 509 of 957(53.2%) were non-Hispanic White. Median age was 1.8 years (IQR, 0.4-7.9 years). In total, 399children (41.6%) were enrolled in school, of whom 279 (69.9%) missed school after discharge.Median duration of postdischarge absence was 9.1 days (IQR, 0-27.9 days) among all childrenenrolled in school and 16.9 days (IQR, 7.9-43.9 days) among the 279 children with postdischargeabsence. Among 960 primary caregivers, 506 (52.7%) were employed outside the home, of whom277 (54.7%) missed work. Median duration of postdischarge work absence was 2 days (IQR, 0-10days) among all employed primary caregivers, and 8 days (IQR, 4-20 days) among the 277 caregiverswho missed work after discharge. The odds of postdischarge school absence and greater durationof absence increased for children 5 years or older (compared with 0-4 years, odds ratios [ORs] for 5-8years, 3.20 [95% CI, 1.69-6.05] and 2.09 [95% CI, 1.30-3.37], respectively; ORs for 9-12 years, 2.49[95% CI, 1.17-5.27] and 2.32 [95% CI, 1.30-4.14], respectively; and ORs for 13-18 years, 2.37 [95% CI,1.20-4.66] and 1.89 [95% CI, 1.11-3.24], respectively) and those with a preexisting comorbidity (ORs,1.90 [95% CI, 1.10-3.29] and 1.76 [95% CI, 1.14-2.69], respectively).

(continued)

Key PointsQuestion How often and for how long

do children and their caregivers miss

school or work after critical care

hospitalization for acute

respiratory failure?

Findings In this secondary analysis of

the Randomized Evaluation of Sedation

Titration for Respiratory Failure clinical

trial, more than two-thirds of children

missed school after discharge for a

median of 9.1 days. Among primary

caregivers, more than half missed work

after their child’s hospitalization for a

median of 2 days.

Meaning These findings suggest that

children and their caregivers often miss

school or work after critical care

hospitalization for acute respiratory

failure; these children may be at

increased risk of lower educational

achievement, economic hardship, and

poor health outcomes in adulthood.

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Open Access. This is an open access article distributed under the terms of the CC-BY License.

JAMA Network Open. 2021;4(12):e2140732. doi:10.1001/jamanetworkopen.2021.40732 (Reprinted) December 23, 2021 1/15

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Abstract (continued)

CONCLUSIONS AND RELEVANCE In this secondary analysis of a cluster randomized trial, 2 in 3children hospitalized for acute respiratory failure missed school after discharge, for a medianduration of nearly 2 weeks. In addition, more than half of primary caregivers missed work afterdischarge. The magnitude of school absenteeism suggests that children may be at increased risk forlower educational achievement, economic hardship, and poor health outcomes in adulthood.

JAMA Network Open. 2021;4(12):e2140732. doi:10.1001/jamanetworkopen.2021.40732

Introduction

Survivors of critical illness and their families commonly experience physical, emotional, and cognitiveproblems after hospitalization. These sequelae—termed postintensive care syndrome, or PICS1—havebeen increasingly recognized in survivors of pediatric critical illness.2,3 Because child and familyhealth are closely entwined, deterioration in a child’s health has spillover effects onto the family,further impeding the child’s recovery and worsening their long-term health.2,4 Owing to thereciprocal relationship between child and family health, it is important to examine outcomes aftercritical illness not only among children, but also in their caregivers and siblings.3,4

Children and their families may also experience financial effects after critical illness, includinginability of caregivers to return to work.5,6 Indeed, a recent meta-analysis found only 1 in 3 adults whosurvived critical illness was able to return to work within 3 months of discharge, and inability to returnto work was associated with worse psychological outcomes.7 Similarly, children and their caregiversmay have prolonged absence from school and work. However, the rate and duration of school andwork absence after pediatric critical illness are unknown.

Thus, among participants in the Randomized Evaluation of Sedation Titration for RespiratoryFailure (RESTORE) trial,8,9 we measured the rate and duration of school and work absence amongchildren who survived pediatric intensive care unit (PICU) hospitalization for acute respiratory failureand their caregivers, respectively. In addition, we identified patient, family, and hospitalizationcharacteristics associated with prolonged school or work absence.

Methods

PatientsRESTORE, a 31-center cluster randomized trial,8 enrolled 2459 patients aged 2 weeks to 17 years fromJune 6, 2009, to December 2, 2013; consent was withdrawn for 10, leaving 2449 patients. Inclusioncriteria included invasive mechanical ventilation for acute respiratory failure. Each site obtainedinstitutional review board approval and written informed consent from the legal guardians of patientparticipants. Parents and guardians provided consent during acute hospitalization for follow-up at 6months after PICU discharge. Telephone follow-up assessments were conducted on a sample ofparticipants stratified by age and site. In total, 1360 patients survived hospitalization and wereselected for follow-up.10,11 Thirty patients died before follow-up, leaving 1330 patients eligible forfollow-up at 6 months, completed from January 12, 2010, to April 13, 2015. This secondary analysiswas conducted from July 1, 2020, to September 30, 2021. Our study follows the Strengthening theReporting of Observational Studies in Epidemiology (STROBE) reporting guidelines.

Primary OutcomesDuring the 6-month postdischarge survey, caregivers were asked about school enrollment, schoolabsence, employment, and work absences among children, siblings, and primary and secondarycaregivers (Table 1 and eMethods 1 in Supplement 1). The primary outcomes of this study were schooland work absences in the 6 months after discharge among patients who survived pediatric

JAMA Network Open | Critical Care Medicine School and Work Absence After Hospitalization for Pediatric Acute Respiratory Failure




https://www.equator-network.org/reporting-guidelines/strobe/


respiratory failure and their primary caregivers. Specifically, we measured (1) the rate and duration ofabsence from school, preschool, or day care (herein referred to as school) during the 6 months afterdischarge among patients who were enrolled in school before the hospitalization and (2) the rate andduration of work absence during the 6 months after discharge among primary caregivers whoreported full-time or part-time employment outside of the home.

We hypothesized that the rate and duration of school absence would be associated with theduration of hospitalization, so we focused our primary outcomes on absenteeism after discharge.Because the follow-up survey asked about total duration of school absence (inclusive of schoolmissed during hospitalization), we calculated the rate and duration of postdischarge school absenceamong patients discharged during the school year (which we defined as September through June)by subtracting the estimated number of weekdays missed during hospitalization (5 weekdays per 7days of hospitalization, described further in eMethods 2 in Supplement 1) from the total number ofschool days reported as missed.

Secondary OutcomesSecondary outcomes included the rate of chronic absenteeism after discharge (defined as missing>15 days of school)12,13 among patients who survived pediatric respiratory failure; the rate andduration of any school absence (either during hospitalization or after discharge); the rate andduration of work absence during hospitalization among primary caregivers; the rate and duration ofwork absence among secondary caregivers during hospitalization and after discharge; and the rateand duration of school absence among siblings during hospitalization and after discharge. As with theprimary outcomes, the secondary outcomes were measured among at-risk individuals (ie, childrenenrolled in school and caregivers employed before hospitalization).

Table 1. Rate and Duration of School and Work Absences

Participant Rate and durationa

Child

Postdischarge school days

Any missed days, No./total No. (%) 279/399 (69.9)

No. of missed days, median (IQR) 9.1 (0-27.9)

Primary caregiver

Postdischarge work days


No. of missed days, median (IQR) 2 (0-10)

During hospitalization work days



Secondary caregiver

Postdischarge work days



During hospitalization work days


No. of missed days, median (IQR) 5.5 (2-10)a Rate and duration of school or work missed were determined through the

following survey questions: (1) Has your child missed any days of day care,preschool, or school since being admitted to the hospital roughly 6 monthsago? (2) How many days of day care, preschool, or school has your childmissed? (3) Since your child was discharged from the hospital, how many dayshave you had to stay home from work to be with him or her when you havebeen planning to work? and (4) Since your child was discharged from thehospital, how many days has another person who had been planning to workhad to stay home from work to be with him or her?





Subgroup AnalysesWe completed several subgroup analyses to better characterize the burden of school absence. First,to evaluate the association of acute respiratory failure with elementary, middle, and high schoolabsence vs day care or preschool absence, we measured the rate and duration of postdischargeschool absence among children 5 years or older and among children 4 years or younger. In addition,to estimate the association with part-time day care or preschool enrollment, we measured the rateand duration of postdischarge school absence assuming a planned attendance of 2 days per week forchildren 4 years or younger. To differentiate the association of acute hospitalization from baselinehealth, we measured the rate and duration of school absence among children by preexistingcomorbidity status. Finally, to understand how a child’s age is associated with work absence, weevaluated rate and duration of postdischarge primary caregiver work absence by child age group(0-4, 5-9, 10-12, and 13-18 years).

Statistical AnalysisTo identify risk factors associated with school and work absenteeism, we completed several analyses.First, we evaluated whether the following characteristics differed across 4 groups defined byduration of absenteeism (no missed school/work and tertiles of missed school/work): patientcharacteristics (age, sex, race and ethnicity, preadmission functional status [Pediatric OverallPerformance Category],14 and comorbidities); family characteristics (primary caregiver educationallevel and daily activity, secondary caregiver daily activity, median household income of zip code ofresidence); hospitalization characteristics (severity of illness [measured by Pediatric Risk of MortalityIII],15 primary diagnosis, and PICU and hospital lengths of stay); and posthospitalizationcharacteristics (hospital readmission, emergency department use after discharge). We evaluatedtrends in characteristics across these 4 groups using the χ2 test for trend or the nonparametric testfor trend (Jonckheere-Terpstra test).16

Second, we fit a multivariable ordinal logistic (proportional odds) regression model forcumulative categories of duration of school absence (eg, longer or medium absence vs short or noabsence), which included the following characteristics as risk factors associated with outcomes: agegroup (0-4, 5-9, 10-12, and 13-18 years), race and ethnicity, baseline functional impairment, priorcomorbidity, admission diagnosis, and primary caregiver’s daily activity (full-time employment, part-time employment, homemaker, and other [ie, student, retired, or disabled]). In addition, we fitlogistic regression models (yes or no absence) using the above risk factors.

We fit additional multivariable models including a dichotomous variable for the presence of asecondary caregiver and a count variable for the number of siblings to understand their impact onpostdischarge school absence. Finally, to understand the association of the RESTORE intervention(protocolized sedation) with outcomes, we compared rates and duration of absence between theintervention and usual care arms by χ2 and Wilcoxon rank-sum tests. Because RESTORE was a clusterrandomized trial, we also explored multilevel models (patients nested within sites) in preliminaryanalyses but found no appreciable site effect, so we present results without adjustment for site forsimplicity.

The caregivers of 7 children did not recall whether they missed school, and a caregiver of 1 childdid not respond to this question. For these children, we assumed no school was missed. In addition,caregivers of 10 children reported missed school but did not quantify the numbers of days missed.These children were excluded from analyses of postdischarge school absence. Statistical analyseswere performed with Stata software, version 15 (StataCorp LLC). Two-sided P < .05 indicatedstatistical significance.

Results

Of 1330 patients enrolled in RESTORE and eligible and selected for 6-month postdischarge follow-up,370 (27.8%) did not complete follow-up interviews (including 263 [19.8%] lost to follow-up) and 960




(72.2%) had a follow-up interview completed by a parent or guardian at a median of 6.9 months(IQR, 5.7-8.5 months) after discharge (Figure 1) and were included in this study. Demographicinformation was previously reported.10 Briefly, the cohort included 443 girls (46.1%) and 517 boys(53.9%). Race and ethnicity data were obtained from the medical record when available; if notavailable, research staff were instructed to ask families directly. In total, 33 of 957 patients (3.4%)with available data were Asian; 167 (17.5%), Black; 208 (21.7%), Hispanic/Latinx; 509 (53.2%),non-Hispanic White; and 40 (4.2%), other (American Indian or Alaska Native, Native Hawaiian orother Pacific Islander, and multiracial or >1 race and ethnicity).12,17,18 Median age was 1.8 years (IQR,0.4-7.9 years).

Child School AbsenceIn total, 399 children (41.6%) were enrolled in school (defined as day care, preschool, or school)before hospitalization and discharged between September and June, of whom 279 (69.9%) missedschool after discharge. Median duration of postdischarge school absence was 9.1 days (IQR, 0-27.9days) among all children enrolled in school and 16.9 days (IQR, 7.9-43.9 days) among the 279 withany postdischarge absence (Table 1 and Figure 2). In total, 153 of 399 children (38.3%) met criteriafor chronic absenteeism after discharge, missing more than 15 days of school. Among the 279children with any postdischarge absence, 153 (54.8%) met criteria for chronic absenteeism.

Patient characteristics including older age, preexisting functional impairment, and preexistingcomorbidity were more common among children with longer duration of postdischarge school

Figure 1. Flow Diagram of Study Participants

3767 Children with acute respiratory failure eligible for RESTORE

2459 Children with acute respiratory failure enrolled in RESTORE

2138 Parents or guardians of RESTORE patients consented to follow-up

1360 Eligible for 6-mo follow-up

960 Completed 6-mo follow-up interview

466 Children enrolled in school, preschool, or day care

506 of 960 Primary caregivers employed

409 Children discharged September through June

399 Children with quantification of numbers of days missed

614 of 773 Secondary caregivers employed

1417 of 1559 Siblings enrolled in school, preschool, or day care

1308 Did not consent for RESTORE

321 Excluded10 Consent withdrawn by parents

311 Did not provide consent for follow-up

778 Excluded136 Died during hospitalization642 Ineligible or not selected for

follow-up by random sample

400 Excluded30 Died before follow-up

370 Unable to obtain follow-up interview data

RESTORE indicates Randomized Evaluation ofSedation Titration for Respiratory Failure.




absence (Table 2). Children with a longer median PICU length of stay had a significantly longerduration of postdischarge school absence (9.7 days [IQR, 6.0-16.5 days] for no absence vs 12.7 days[IQR, 6.8-19.3 days] for long absence; P = .04 for trend).

In multivariable models, the odds of postdischarge school absence and greater duration ofabsence increased for children 5 years or older (compared to 0-4 years, odds ratios [ORs] for 5-8years, 3.20 [95% CI, 1.69-6.05] and 2.09 [95% CI, 1.30-3.37], respectively; ORs for 9-12 years, 2.49[95% CI, 1.17-5.27] and 2.32 [95% CI, 1.30-4.14], respectively; and ORs for 13-18 years, 2.37 [95% CI,1.20-4.66] and 1.89 [95% CI, 1.11-3.24], respectively) and those with a preexisting comorbidity (ORs,1.90 [95% CI, 1.10-3.29] and 1.76 [95% CI, 1.14-2.69], respectively) (Table 3). In the ordinal logisticregression model, baseline functional impairment was also associated with increased odds of longerdurations of school absence (OR, 1.65; 95% CI, 1.05-2.60) (Table 3). Respiratory failure due tobronchiolitis or asthma was associated with lower odds of longer durations of school absencecompared to respiratory failure due to pneumonia (OR, 0.54; 95% CI, 0.34-0.87) (Table 3). Thepresence of a secondary caregiver and number of siblings were not associated with rate ofpostdischarge school absence (eTable 1 in Supplement 1). The rates of postdischarge school absence(136 of 194 [70.1%] vs 143 of 205 [69.7%]; P = .94) and duration of postdischarge school absence(median, 8.9 days [IQR, 0-26.4 days] vs 9.3 days [IQR, 0-27.9 days]; P = .87) were similar amongchildren randomized to protocolized sedation vs usual care (eTable 2 in Supplement 1).

Of the 466 children enrolled in school (regardless of month of discharge), 384 (82.4%) missedschool during hospitalization and/or after discharge, for a median of 20 days (IQR, 4-45 days).Among children who missed school, the median time missed during hospitalization and/or afterdischarge was 25 days (IQR, 12-60 days). Older age (median, 9.1 years [IQR, 5.9-12.5 years]),functional impairment (55 of 118 children [46.6%]), and preexisting comorbidity (eg, neurological/neuromuscular disorder, 22 of 118 children [18.6%]) were more common among children with longerduration of during-hospitalization and/or postdischarge school absence (eTable 3 in Supplement 1).

Primary Caregiver Work AbsenceOf 960 primary caregivers, 506 (52.7%) were employed before the hospitalization, of whom 277(54.7%) missed work after discharge. Median duration of postdischarge work absence was 2 days(IQR, 0-10 days) among all employed primary caregivers and 8 days (IQR, 4-20 days) among the 277who missed work after discharge.

A child’s preexisting comorbidity (eg, cancer, 13 of 84 [15.5%]), functional disability at hospitaladmission (32 of 84 [38.1%]) and discharge (48 of 84 [57.1%]), and longer PICU length of stay

Figure 2. School and Work Days Absent in the 6 Months After Child’s Hospital Discharge

0 20 40 60

No.

of d

ays m

isse

d

Children, %

1-5

6-10

11-15

16-20

21-25

26-30

31-35

36-40

41-45

46-50

>50

Children who missed schoolA

0 20 40 60

No.

of d

ays m

isse

d

Caregivers, %

1-5

6-10

11-15

16-20

21-25

26-30

31-35

36-40

41-45

46-50

>50

Caregivers who missed workB

Includes 399 children with quantification of daysmissed and 506 primary caregivers employed outsidethe home.







Table 2. Patient, Family, and Hospitalization Characteristics Across Duration of Postdischarge School Absence Category (N = 399)

Characteristic

School absence categorya

P valuebNo absence Short absence (n = 94) Medium absence (n = 92) Long absence (n = 93)Duration of school absence, median (IQR)[range], d

0 (0-0) [0-0] 5.7 (2.9-7.9)[0.3-10.0]

17.0 (13.6-22.1)[10.7-30.7]

64.3 (43.8-96.3)[31.7-219.8]

<.001

Patient characteristics

Age at PICU admission, median (IQR), y 3.4 (0.6-10.1) 6.7 (4.4-10.9) 6.5 (3.4-12.3) 9.0 (5.8-12.5) <.001

Sex

Female 52 (43.3) 37 (39.4) 43 (46.7) 42 (45.2).59

Male 68 (56.7) 57 (60.6) 49 (53.3) 51 (54.8)

Race and ethnicity

Asian 7 (5.8) 4 (4.3) 1 (1.1) 0

.93

Black 22 (18.3) 18 (19.1) 21 (22.8) 17 (18.5)

Hispanic/Latinx 16 (13.3) 12 (12.8) 11 (12.0) 13 (14.1)

Non-Hispanic White 67 (55.8) 55 (58.5) 59 (64.1) 61 (66.3)

Otherc 8 (6.7) 5 (5.3) 0 1 (1.1)

Missing, No. 0 0 0 1

Functional impairment (POPC >1) atbaselined

28 (23.3) 21 (22.3) 33 (35.9) 42 (45.2) <.001

Preexisting comorbidity

Asthma 13 (10.8) 34 (36.2) 21 (22.8) 11 (11.8) .89

Cancer 6 (5.0) 2 (2.1) 1 (1.1) 19 (20.4) <.001

Chromosomal abnormality 4 (3.3) 3 (3.2) 6 (6.5) 10 (10.7) .02

Prematurity 12 (10.0) 8 (8.5) 9 (9.8) 10 (10.7) .82

Neurological/neuromuscular disorder 10 (8.3) 7 (7.4) 6 (6.5) 18 (19.3) .02

Seizure disorder 7 (5.8) 11 (11.7) 14 (15.2) 17 (18.3) .004

No known comorbidity 73 (60.8) 51 (54.3) 43 (46.7) 56 (60.2) .009

Family characteristics

Primary caregiver educational level

Some high school 5 (5.5) 8 (11.3) 9 (13.6) 3 (4.8)

.77

High school graduate 18 (19.8) 17 (23.9) 18 (27.3) 14 (22.6)

Some college or technical school 35 (38.5) 15 (21.1) 12 (18.2) 22 (35.5)

College graduate/postgraduate 33 (36.3) 31 (43.7) 27 (40.9) 23 (37.1)

Missing, No. 29 23 26 31

Primary caregiver main daily activities

Working

.47

Full-time 48 (40.3) 52 (55.9) 48 (53.3) 43 (46.7)

Part-time 16 (13.4) 17 (18.3) 18 (20.0) 14 (15.2)

Keeping house/raising children 42 (35.3) 17 (18.3) 17 (18.9) 27 (29.3)

Other (ie, student, retired, disabled) 13 (10.9) 7 (7.5) 7 (7.8) 8 (8.7)

Missing, No. 1 1 2 1

Secondary caregiver main daily activities

Working

.13

Full-time 74 (77.9) 52 (72.2) 58 (89.2) 61 (82.4)

Part-time 7 (7.4) 8 (11.1) 2 (3.1) 4 (5.4)

Keeping house/raising children 4 (4.2) 5 (6.9) 5 (7.7) 3 (4.1)

Other (ie, student, retired, disabled) 10 (10.5) 7 (9.7) 0 6 (8.1)

Missing, No. 25 22 27 19

Household income of zip code of residence,median (IQR), $

55 521 (43 215-73 490) 62 691 (45 813-82 069) 56 315 (45 603-75 406) 63 571 (47 485-83 564) .14

Income category of zip code of residence

<$40 000 24 (20.0) 16 (17.0) 12 (13.0) 11 (11.8)

.13$40 000-$79 999 70 (58.3) 51 (54.3) 59 (64.1) 56 (60.2)

≥$80 000 26 (21.7) 27 (28.7) 21 (22.8) 26 (28.0)

Duration of missed work of primarycaregiver, median (IQR), d

During hospitalization 8 (2-14) 8 (5-15) 15 (8-20) 20 (10-30) <.001

After hospitalization 0 (0-5) 2 (0-5) 5 (0-10) 10 (0-39) <.001

(continued)




(median, 12.3 days [IQR, 7.3-19.1 days]) were more common among primary caregivers with longerduration of postdischarge work absence (eTable 4 in Supplement 1). Duration of postdischarge workabsence among primary caregivers was associated with duration of postdischarge school absence.Among children with no school absence after discharge, their primary caregivers missed work for amedian of 0 days (IQR, 0-5 days) after discharge, compared with a median of 10 days (IQR, 0-39days) for primary caregivers of children who missed the most days of school (P < .001 for trend)(Table 2).

Rate of primary caregiver postdischarge work absence (142 of 269 [52.8%] vs 135 of 237[57.0%]; P = .35) and duration of postdischarge work absence (median, 2 days [IQR, 0-10 days] vs 2days [IQR, 0-10 days]; P = .61) were similar between caregivers of children in the sedation protocol vsusual care group (eTable 2 in Supplement 1). In total, 426 primary caregivers (84.2%) missed workduring their child’s hospitalization. Median duration of during-hospital work absence was 10 days(IQR, 4-20 days) among all previously employed primary caregivers, and 10 days (IQR, 6-20 days)among the 426 with any during-hospital absence.

Secondary Caregiver Work AbsenceAmong 773 secondary caregivers, 614 (79.4%) were employed before the hospitalization, of whom193 (31.4%) missed work after discharge. Median duration of postdischarge work absence was 2 days(IQR, 0-2 days) among all employed secondary caregivers and 4 days (IQR, 2-8 days) among the 193who missed work after discharge. Child functional impairment at admission (28 of 58 [48.3%]) anddischarge (29 of 58 [50.0%]) were more common among secondary caregivers with longer durationof postdischarge work absence (eTable 5 in Supplement 1).

In total, 484 secondary caregivers (78.8%) missed work during hospitalization. Medianduration of during-hospital work absence was 6 days (IQR, 2-10 days) among all employed secondarycaregivers and 8 days (IQR, 5-14 days) among the 484 who missed work during hospitalization.

Table 2. Patient, Family, and Hospitalization Characteristics Across Duration of Postdischarge School Absence Category (N = 399) (continued)

Characteristic

School absence categorya

P valuebNo absence Short absence (n = 94) Medium absence (n = 92) Long absence (n = 93)Hospitalization characteristics

PRISM III-12 score, median (IQR)e 7.5 (5-11) 8 (4-13) 7 (3-14) 10 (5-16) .10

Primary diagnosis category

Bronchiolitis or asthma 38 (31.7) 32 (34.0) 22 (23.9) 6 (6.4)

<.001Pneumonia or aspiration pneumonia 60 (50.0) 46 (48.9) 47 (51.1) 52 (55.9)

Acute respiratory failure related tosepsis

13 (10.8) 11 (11.7) 12 (13.0) 22 (23.7)

Otherf 9 (7.5) 5 (5.3) 11 (11.9) 13 (14.0)

Randomized to RESTORE sedation protocol 58 (48.3) 49 (52.1) 41 (44.6) 46 (49.5) .87

PICU length of stay, median (IQR), d 9.7 (6.0-16.5) 7.3 (4.6-10.9) 10.4 (7.0-14.4) 12.7 (6.8-19.3) .04

Functional impairment (POPC >1) atdischarged

39 (32.5) 26 (27.7) 48 (52.2) 54 (58.1) <.001

Posthospitalization outcomes in 6 mo afterdischarge

Emergency department use 44 (36.7) 24 (25.5) 30 (32.6) 42 (45.2) .20

Hospital readmission 31 (25.8) 13 (13.8) 27 (29.3) 41 (44.1) .002

Abbreviations: PICU, pediatric intensive care unit; POPC, Pediatric Overall PerformanceCategory; PRISM III-12, Pediatric Risk of Mortality III score from first 12 hours in the PICU;RESTORE, Randomized Evaluation of Sedation Titration for Respiratory Failure.a Unless otherwise indicated, data are expressed as number (%) of patients. Percentages

have been rounded and may not total 100.b Calculated for comparisons across categories using the χ2 test for trend or the

nonparametric test for trend (Jonckheere-Terpstra test) for categorical and continuousvariables, respectively.

c Other includes American Indian or Alaska Native, Native Hawaiian or other PacificIslander, and multiracial or more than 1 race and ethnicity.

d Disability was determined using the POPC. A score of 1 indicates a good functionalstatus, whereas a score of 2 or greater represents at least mild disability.

e Uses physiologic and laboratory variables from the first 12 hours of PICU admission tocalculate the overall risk of mortality. Scores range from 0 to 74, with higher scoresrepresenting a higher risk of mortality.

f Includes pulmonary edema or hemorrhage, pulmonary hypertension,laryngotracheobronchitis, thoracic trauma, pneumothorax, acute chest syndrome,pertussis, exacerbation of lung disease (cystic fibrosis or bronchopulmonarydysplasia), acute respiratory failure related to blood transfusions, acute respiratoryfailure after bone marrow transplantation, and other.







Sibling School AbsenceOf 960 children with acute respiratory failure, 790 (82.3%) had a total of 1559 siblings, of whom 1417(90.9%) were enrolled in school. Only 66 (4.7%) of the school-enrolled siblings missed school afterdischarge. The median duration of school absence after discharge was 0 days (IQR, 0-0 days) and 2days (IQR, 4-10 days) for those with postdischarge school absence. In total, 282 siblings (19.9%)missed school during hospitalization. The median duration of school absence during hospitalizationwas 0 days (IQR, 0-0 days) among all siblings enrolled in school and 3 days (IQR, 2-6 days) forchildren with during-hospital school absence.

Table 3. Multivariable Models of Risk Factors Associated With Rate and Duration of School AbsenceAfter Hospital Discharge

Variable OR (95% CI)a P value

Risk factors associated with rate of school absence (n = 392)b

Age group, y

0-4 1 [Reference]

.0015-8 3.20 (1.69-6.05)

9-12 2.49 (1.17-5.27)

13-18 2.37 (1.20-4.66)

Minority race or ethnicity 0.92 (0.56-1.51) .74

Functional impairment (POPC >1) at baselinec 1.53 (0.83-2.80) .17

Preexisting comorbidity 1.90 (1.10-3.29) .02


Pneumonia 1 [Reference]

.34Bronchiolitis or asthma 0.80 (0.45-1.42)

Acute respiratory failure related to sepsis 1.28 (0.61-2.71)

Other 1.91 (0.77-4.74)


Working full-time 1 [Reference]

.001Keeping house/raising children 0.30 (0.17-0.55)

Working part-time 0.79 (0.39-1.58)

Other (student, retired, disabled) 0.47 (0.20-1.09)

Risk factors associated with category of duration of school absence (n = 392)d

Age group, y

0-4 1 [Reference]

.005d5-8 2.09 (1.30-3.37)

9-12 2.32 (1.30-4.14)

13-18 1.89 (1.11-3.24)

Minority race or ethnicity 0.80 (0.54-1.18) .26

Functional impairment (POPC >1) at baselinec 1.65 (1.05-2.60) .03

Preexisting comorbidity 1.76 (1.14-2.69) .01


Pneumonia 1 [Reference]

<.001Bronchiolitis or asthma 0.54 (0.34-0.87)

Acute respiratory failure related to sepsis 1.58 (0.89-2.78)

Other 2.29 (1.14-4.63)


Working full-time 1 [Reference]

.12Keeping house/raising children 0.57 (0.35-0.91)

Working part-time 0.89 (0.53-1.47)

Other (student, retired, disabled) 0.68 (0.33-1.37)

Abbreviations: OR, odds ratio; POPC, Pediatric OverallPerformance Category.a The largest group within each variable was chosen as

the reference category.b An OR of greater than 1.0 indicates higher odds of

missed school during hospital admission to 6 monthsafter discharge. Odds ratios were calculated usinglogistic regression.

c Disability was determined using the POPC. A score of1 indicates a good functional status, while a score of2 or greater represents at least mild disability.

d An OR of greater than 1.0 indicates higher odds ofmissed school during hospital admission to 6 monthsafter discharge. The OR describes the change in oddsof increasing categories of duration of schoolabsence, calculated using ordinal logistic(proportional odds) regression.




Subgroup AnalysesOf the 399 children enrolled in school, 247 (61.9%) were 5 years or older, of whom 196 (79.4%)missed school after discharge. Median duration of postdischarge school absence was 13.3 days (IQR,1.6-42.1 days) among all children 5 years or older enrolled in school and 19.6 days (IQR, 8.6-55.0 days)among the 196 with any postdischarge absence (eTable 6 in Supplement 1). In total, 152 childrenenrolled in school were 4 years or younger, of whom 83 (54.6%) missed school after hospitaldischarge. Median duration of postdischarge school absence was 3.6 days (IQR, 0-14.6 days) amongall children 4 years or younger enrolled in school and 12.9 days (IQR, 7.1-22.9 days) among the 152with any postdischarge absence (eTable 6 in Supplement 1). In our analysis examining a 2-day schoolweek for children 4 years and younger, 98 (64.5%) missed school. Median duration of postdischargeschool absence was 9.3 days (IQR, 0-21.9 days) among all children 4 years or younger enrolled inschool and 17.0 days (IQR, 9.3-27.6 days) among the 98 with any postdischarge absence.

Among 202 school-enrolled children without preexisting comorbidity, 129 (63.9%) missedschool after discharge. Median duration of postdischarge school absence was 6.5 days (IQR, 0-20.7days) overall and 16.4 days (IQR, 7.9-34.3 days) among the 129 with any postdischarge absence.Among 197 school-enrolled children with preexisting comorbidity, 150 (76.1%) missed school afterdischarge. Median duration of postdischarge school absence was 10.7 days (IQR 1.0-40.9 days)overall and 17.1 days (IQR, 7.9-57.9 days) among the 150 with any postdischarge absence. Rates ofpostdischarge work absenteeism among primary caregivers did not differ by child age category(eTable 7 in Supplement 1).

Discussion

In this longitudinal follow-up of the RESTORE trial cohort, 69.9% of patients who survived pediatricacute respiratory failure missed school (broadly defined as school, preschool, or day care) afterdischarge. Furthermore, 54.7% of primary caregivers missed work after their child’s hospitalization.Importantly, the durations of school and work absenteeism were substantial—a median of nearly 2five-day school weeks (9.1 days) of postdischarge school absence for children and a median of 1.5five-day work weeks (8 days) of postdischarge work absence for primary caregivers who missedwork. For children 5 years or older, the median duration was even longer (13.3 days). Among childrenwho missed school, the duration of school absenteeism commonly exceeded the threshold forchronic absenteeism (>15 days missed), which is known to be associated with increased risk for anumber of negative outcomes, including reduced academic achievement, economic hardship, andpoor health outcomes in adulthood.12 These findings suggest that patients who survive pediatricrespiratory failure are at increased risk for long-term sequelae not only due to their acute illness butalso as a result of school missed during and after hospitalization.

Our study also examined school and work absence among siblings and secondary caregivers,respectively. Only 1 in 5 siblings missed school during the hospitalization, and the duration of absencewas modest (median, 3 days). Furthermore, absence after hospitalization was rarer (occurring in only4.7% of siblings). The rate and duration of absence among secondary caregivers, however, werenearly as high as those among primary caregivers.

As would be expected, worse child health status (eg, preexisting comorbidity, functionalimpairment) was associated with a greater burden of school and work absence. However, evenamong children without preexisting comorbidity, almost 63.9% missed school for a median durationof 6.5 days. Unlike prior studies,19,20 we did not find an association between neighborhood incomeand missed school or work among children or caregivers.

Consistent with prior studies, we found that rates of postdischarge absence differed by hospitaldiagnosis. Respiratory failure due to asthma or bronchiolitis was associated with a lower burden ofschool absence than respiratory failure due to pneumonia, sepsis, or other causes. Previous studieshave shown that hospitalization for acute medical conditions,21 including infections,22 burns,23

transplant,24 and diabetes,25 are associated with subsequent absenteeism and lower academic







achievement. Similarly, chronic health conditions and special health care needs (eg, prescriptionmedications, specialized medical care, or educational services) are associated withschool absence.26-28

Although it is not surprising that children would miss school during critical illness, the durationof school absence experienced by some children in our study is sufficient to result in long-termacademic impairment. School absence in childhood has been associated with worse long-termsocioeconomic and health outcomes, including school dropout, depression, substance abuse, andeconomic hardships in adulthood.12,29,30 The importance of school attendance begins beforeelementary school, because absence from preschool has been associated with lower levels ofkindergarten readiness and increased risk of needing reading intervention by second grade.31 Arecent analysis estimated that 5.5 million years of life were potentially lost owing to COVID-19–relatedschool closures during 2020 alone, underscoring the importance of school attendance on healthoutcomes in adulthood.32 Importantly, the longer the duration of school absence, the greater the riskof impaired academic achievement. Chronic absenteeism (missing >15 days of school)13 is animportant threshold associated with lower academic achievement and higher participation in riskyhealth behaviors.12 More than half of the children in our study who missed school after discharge metcriteria for chronic absenteeism.

Our study suggests that post-PICU school absenteeism is an important target for futureinterventions. Although school absenteeism is common after hospitalization and consistentlyassociated with a multitude of negative outcomes, a recent study33 suggested that pediatricians askabout school absence in fewer than half of visits after hospitalization. Future work is needed tounderstand the barriers to school participation, to develop interventions to mitigate absenteeism,and to help children catch up on missed school.

Consistent with prior studies,4,34-36 and not unexpectedly given continued recovery afterdischarge, caregivers in our study commonly missed work after their child’s hospitalization. Notably,however, our study does not account for changes in informal caregiving practices at home, nor doesit quantify the financial cost of missed work. In our cohort, work absence occurred during and afterhospitalization and was strongly associated with the duration of child school absence, creating thepotential for additive or multiplicative stress on families. Prior studies show 1 in 3 parents worry aboutjob loss or reduced wages when taking time off to care for a sick child37 and that child healthconditions are associated with lower parental employment.38,39 Even with employer-based sickleave, paid time off, and federal family leave programs, parents commonly report being unable tomiss work for child illness.40 Indeed, only 56% of US employees are eligible for Family Medical LeaveAct protections, which guarantee employment protection but do not guarantee wages.41 Parentswith access to leave or paid benefits were more likely to miss work when needed by their child,suggesting awareness and access to family leave benefits may decrease this stressful conflict.40

Thus, given the magnitude of missed work found in our study and the hardships described by parentsin prior studies, there is a great need for programs and policies to support families during and afterpediatric hospitalization.

LimitationsOur study has several limitations. First, follow-up data were not available for all eligible children,creating a potential for bias. However, loss to follow-up was modest (19.8%), and patientcharacteristics were similar between families completing vs not completing follow-up.10 Second,because follow-up surveys occurred 6 months after PICU discharge, recall bias is possible. However,questions prompted respondents to recall both whether any days were missed and the overallnumber—thus, data were captured even if caregivers could not recall the exact duration of absence.Third, we assumed the school year to occur from September through June. However, thisassumption may underestimate the number of school days missed, especially in children older than5 years. Fourth, surveys did not differentiate school absence during vs after hospitalization, but wewere able to estimate postdischarge absence based on length of hospitalization and total school




absence. Fifth, data on prehospitalization school and work absence were not available. However, therate and duration of school absence in children without preexisting comorbidity were only slightlyless than the overall cohort rate and duration, suggesting much of the absence observed wasattributable to the hospitalization for respiratory failure.10

Conclusions

In this cohort study, nearly 70% of children hospitalized with acute respiratory failure missed schoolafter discharge, for a median duration of nearly 2 school weeks. Similarly, half of primary caregiversmissed work after their child’s hospital discharge. The magnitude of school absenteeism suggests arisk for negative downstream educational, financial, and health outcomes.

ARTICLE INFORMATIONAccepted for Publication: October 29, 2021.

Published: December 23, 2021. doi:10.1001/jamanetworkopen.2021.40732

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

Corresponding Author: R. Scott Watson, MD, MPH, Division of Pediatric Critical Care Medicine, Department ofPediatrics, University of Washington, 4800 Sand Point Way NE, FA2.112-Critical Care, Seattle, WA 98105 ([email protected]).

Author Affiliations: Division of Critical Care Medicine, Department of Pediatrics, University of Michigan, AnnArbor (Carlton, Barbaro); Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics,University of Michigan, Ann Arbor (Carlton, Barbaro); Department of Learning Health Sciences, University ofMichigan Medical School, Ann Arbor (Donnelly); Veterans Affairs Center for Clinical Management Research, HealthService Research and Development Center of Innovation, Ann Arbor, Michigan (Prescott); Division of Pulmonaryand Critical Care, Department of Internal Medicine, University of Michigan, Ann Arbor (Prescott); Department ofCardiology, Boston Children’s Hospital, Boston, Massachusetts (Asaro); Division of Pediatric Critical Care Medicine,Department of Pediatrics, University of Washington, Seattle (Watson); Center for Child Health, Behavior, andDevelopment, Seattle Children’s Research Institute, Seattle, Washington (Watson); Family and Community Health,School of Nursing, University of Pennsylvania, Philadelphia (Curley); Anesthesia and Critical Care Medicine,Perelman School of Medicine, University of Pennsylvania, Philadelphia (Curley); Research Institute, Children’sHospital of Philadelphia, Philadelphia, Pennsylvania (Curley).

Author Contributions: Drs Carlton and Curley had full access to all the data in the study and take responsibility forthe integrity of the data and the accuracy of the data analysis.

Concept and design: Carlton, Prescott, Barbaro, Watson, Curley.

Acquisition, analysis, or interpretation of data: Carlton, Donnelly, Asaro, Barbaro, Watson, Curley.

Drafting of the manuscript: Carlton.

Critical revision of the manuscript for important intellectual content: Donnelly, Prescott, Asaro, Barbaro,Watson, Curley.

Statistical analysis: Carlton, Donnelly, Asaro.

Obtained funding: Curley.

Administrative, technical, or material support: Prescott, Barbaro.

Supervision: Prescott, Barbaro, Watson.

Conflict of Interest Disclosures: Dr Donnelly reported receiving an editor stipend from the American College ofEmergency Physicians/Annals of Emergency Medicine and a K12 scholar grant from the National Institutes ofHealth/National Heart, Lung, and Blood Institute (NIH/NHLBI) outside the submitted work. Dr Prescott reportedreceiving grants from the Agency for Healthcare Research and Quality, the Veterans Affairs Health ServiceResearch and Development, and the NIH outside the submitted work. Ms Asaro reported receiving grants from theNIH during the conduct of the study. Dr Barbaro reported receiving grants from the NIH during the conduct of thestudy; grants from the NIH outside the submitted work; and serving as the Extracorporeal Life SupportOrganization Registry Chair. Dr Watson reported receiving grants from the NIH during the conduct of the study. Dr





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mailto:[email protected]

mailto:[email protected]

Curley reported receiving grants from NHLBI and Eunice Kennedy Shriver National Institute of Child Health andHuman Development during the conduct of the study.

Funding/Support: The parent study, Randomized Evaluation of Sedation Titration for Respiratory Failure(RESTORE), was supported by grants U01 HL086622 and U01 HL086649 from the NIH/NHLBI and NationalInstitute of Nursing Research. This study was also supported by grants KL2 TR 002241 and UL1 TR 002240 fromthe Michigan Institute for Health and Clinical Research (Dr Carlton).

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection,management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; anddecision to submit the manuscript for publication.

Disclaimer: This manuscript does not represent the views of the Department of Veterans Affairs or the USgovernment.

Group Information: The nonauthor collaborators of the RESTORE Study are listed in Supplement 2.

Additional Information: This material is the result of work supported with resources and use of facilities at theAnn Arbor VA Medical Center.

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SUPPLEMENT 1.eMethods 1. Follow-up Survey QuestionseMethods 2. MeasurementseTable 1. Multivariable Models of Risk Factors to Predict Rate and Duration of School Absence After HospitalDischargeeTable 2. School and Work Absence According to RESTORE Treatment GroupeTable 3. Patient, Family, and Hospitalization Characteristics Across Duration of School Absence Category Duringand After Hospitalization (n = 454)eTable 4. Parent, Family, and Hospitalization Characteristics Across Quartiles of Duration of Postdischarge WorkAbsence Category in Primary Caregivers (n = 506)eTable 5. Patient, Family, and Hospitalization Characteristics Across Quartiles of Duration of Postdischarge WorkAbsence Category Among Secondary Caregivers (n = 614)eTable 6. Postdischarge School Absenteeism by Age GroupeTable 7. Postdischarge Employment and Work Absenteeism by Age Group

SUPPLEMENT 2.Nonauthor Collaborators of the RESTORE Study




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