RESEARCH IN CONTEXT
- Parental posttraumatic stress (PTS) is a known comorbidity of a family’s PICU stay affecting greater than 50% of parents.
- Detrimental effects of acute and subacute parental PTS (1–18 mo post discharge) have been reported. However, the natural history, risk factors, and sequelae of PICU-associated parental PTS have not been described outside of 18 months post PICU discharge.
- This study describes the risk factors and sequelae of parental PTS disorder (PTSD) at two distinct time points within 30 months post PICU discharge.
A child’s admission to the PICU is a time of acute psychologic trauma for the entire family (1). Despite improving outcomes in children, a significant number of parents of PICU patients (10–42%) will meet criteria for posttraumatic stress (PTS) (1,2). The natural history and risk factors of parental PTS disorder (PTSD) in PICU-related trauma have been reported to occur soon after discharge (3–6 mo) or later during the patient’s recovery (> 12 mo) (2–9). PTS occurring in parents negatively impacts the family’s well-being and the child’s mental health (2,4–6,10–14). There are no published data on the prevalence of PICU-associated parental PTSD beyond 18 months post discharge.
We performed the first two center study evaluating long-term PICU-associated parental PTS at two time points over a 30-month period. We hypothesized that there is a significant prevalence of long-term PTSD in caregivers following a child’s PICU stay.
MATERIALS AND METHODS
We conducted a prospective cohort study on parents of patients admitted to the PICUs at Maria Fareri Children’s Hospital in Westchester, NY, and Penn State Health Children’s Hospital in Hershey, PA, from June 2016 to January 2020. This study “Prevalence of long-term PTSD symptoms in parents of children admitted to the PICU” obtained approval from the New York Medical College’s Committee for Protection of Human Subjects (L-11,839) on 12/07/15 and the Penn State College of Medicine’s Institutional Review Board (IRB) (00003891) on 05/23/16. All procedures followed the standards of both IRBs. Written consent was obtained from all parents.
Within 3–14 days of PICU admission, when the study team was on site, we approached parents/guardians whose children (0–17 yr) had an unexpected admission to the PICU for greater than 48 hours. We excluded parents with a history of a psychiatric disorder that required hospitalization in the past 2 years; a current diagnosis of PTSD; a history of suspected or proven child abuse; an inability to speak English; a child who died during the study period; and parents without legal decision-making rights for the patient.
A combination of validated scales and study questionnaires was used at four study time points: T0 (3–14 d into admission), T1 (peridischarge), T2 (3–9 mo post discharge), and T3 (18–30 mo post discharge) (Table 1). The T3 time frame was chosen to reflect 2 years post admission with a 6-month buffer. The Patient Health Questionnaire (PHQ) evaluated baseline mental health (15). The Acute Stress Disorder Scale-5 (ASDS-5) and the PTSD Symptom Scale Interview for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) (PSS-I-5) evaluated parental stress (16–18). The Pediatric Risk of Mortality (PRISM) III score evaluated the severity of illness of the child (19). The Functional Status Scale, Pediatric Overall Performance Category (POPC), and the Cerebral Performance Category assessed the child’s neurocognitive and functional status prior to and following admission (20,21). Additional study questionnaires (https://links.lww.com/PCC/C265; https://links.lww.com/PCC/C266; and https://links.lww.com/PCC/C267) were used to document the medical and psychosocial history of the parent and child.
TABLE 1. -
Assessment Timeline and Data Collection Tools
|Time of Assessment
||Rationale for Timepoints
||Instruments Completed by Parents
||Instrument Completed on Child
|T0 (3–14 d into index PICU admission)
||Capture preadmission data that may be pertinent to parental posttraumatic stress disorder
||Patient Health Questionnaire, additional questionnaires
||FSS, POPC, PCPC, additional questionnaires
|T1 (PICU discharge)
||Capture potential change in health/function of the child and parent acute stress response to admission
||Acute Stress Disorder Scale for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition
||FSS, POPC, PCPC
|T2 (3–9 mo post discharge)
||Capture acute posttraumatic stress response, parent perception of admission, current child and parent medical, socioeconomic, and psychiatric health
||PSSI-5, additional questionnaires
||Additional questionnaires including, parent knowledge of child illness, parent concerns of permanent injury, and child susceptibility to death post discharge
|T3 (18– 30 mo post discharge)
||Capture chronic posttraumatic stress response, parent perception of admission, current child and parent medical, socioeconomic, and psychiatric health
||PSSI-5, additional questionnaires
||Additional questionnaires including,parent concerns of permanent injury and child susceptibility to death post discharge
FSS = Functional Status Score, PCPC = Pediatric Cerebral Performance Category, POPC = Pediatric Overall Performance Category, PSS-I-5 = Posttraumatic Stress Disorder Symptom Scale Interview for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition..
Admission instruments were self-administrated or administered by trained research personnel. Following discharge, all study instruments were administered via phone interview. We obtained permission for all scales not available publicly. Scales were administered and scored per the developers’ instructions and under the guidance of a psychiatrist.
Definitions are based on the criteria established by the scale’s developers. Stress that occurs following an inciting trauma is diagnosed as acute stress disorder (ASD) in the first 4 weeks and PTSD thereafter as a continuum (22).
The ASDS-5 reflects the DSM-5 definition of ASD and has shown greater predictability for PTSD (23). Given this and direct conversations with the developer, Dr. Bryant, we chose to use the lesser validated ASDS-5 inferring validity from the original ASDS (16).
- ASD qualification: a score of greater than or equal to 3 on at least nine of the 14 symptoms on ASDS-5 (16,23).
- PTSD qualification: total PSS-I-5 score greater than or equal to 23 and/or reporting a symptom profile of at least one intrusion, one avoidance, three cognition/mood, and three arousal/reactivity symptoms along with impairment in functioning (18).
As PTS symptoms (PTSS) which do not meet criteria for PTSD may still impact a parent’s functioning, we also assessed parents who met criteria for greater than minimal PTSS (including parents who met PTSD criteria).
- Greater than minimal PTSS: score greater than or equal to 9 on PSS-I-5 (18).
Upon IRB instruction, psychiatric scales were not scored until the data collection for all subjects was completed at T3. Upon scoring, subjects who met the qualification for PTSD or PTSS were contacted via e-mail/phone and offered psychiatric references.
To assess how reported income related to median household income per zip code, we used the calculation below:
- Family income percentage difference: The median family income per zip code was collected from the U.S. census 5-year data averages (24) and then the parent household income percent difference from the zip code median was calculated to help normalize income.
Statistical Analysis Plan
We estimated the prevalence of PTSD to be 10–15% at 18–30 months. At 15% prevalence, our estimated sample size was 196 to satisfy a 95% CI with a maximum error of estimate of 10% (d = 0.05). A loss to follow-up of 20% was assumed and increased our sample size estimate to 245.
The data collected were analyzed using SAS 9.4 (SAS Institute Inc, Cary, NC). All subjects were analyzed as individual data points. Binary variables are reported by counts and percentages, whereas continuous variables are presented as median and interquartile range (IQR). Univariate logistic regression analyses were performed to assess the relationship between PTSD/PTSS and risk factors and then variables with p values less than 0.1 were used for multivariable analysis. The final multivariable model was selected using backward selection. Odds ratios (ORs) along with Wald CI were reported, and a p value of less than 0.05 was considered significant. Missing data points are noted by varying (n) in the univariate tables. Multivariable analysis excluded subjects with relevant missing data points.
Of the 337 eligible parents approached, 265 parents of 188 children (79%) were enrolled (T0) (Table 2; and Supplemental Table 1, https://links.lww.com/PCC/C268). Of those parents enrolled, 55 of 265 (21%) were not included in the analysis for PTS: seven of 265 (3%) were withdrawn due to child death, six of 265 (2%) withdrew from the study, and 42 of 265 (16%) were lost to follow-up (Diagram 1, https://links.lww.com/PCC/C269).
TABLE 2. -
Parent and Child Baseline Demographics
|Characteristics of the Parents
|Total parents enrolled
N = 265
|Female gender, n (%)
|Median parental age (IQR)
|Admission hospital, n (%)
| Maria Fareri Children’s Hospital
| Penn State University Medical Center
|Employment status, n (%)
| Working full time/part time
| Full time at home
|Marital status, n (%)
|Educational status, n (%)
| Noncollege graduate
| College graduate
| No response
|Pre-existing psychiatric disorder on Patient Health Questionnaire, n (%)
|War veteran, n (%)
|History of physical or sexual assault/abuse, n (%)
|History of major accident/disaster, n (%)
|History of self or close family member ICU admit, n (%)
|Characteristics of the Child/Patient
|Total children enrolled
N = 188
|Median age, yr (IQR)
|History of chronic medical illness,
|History of prior neonatal ICU or PICU admission, n (%)
|Median Pediatric Risk of Mortality3 score (IQR)
|Median length of stay in the PICU (IQR)
|Functional change during index admission, n (%)
Decline in Functional Status Scale
IQR = interquartile range.
aMedian value with IQR.
bIllness or diagnosis that requires ongoing medical attention or medication outside of normal preventative care.
Numbers and percentages less than total are due to missing data or rounding.
At discharge, one in four children had a decline in daily functioning. Patient hospital readmission rate was 62 of 195 (32%) between T1 and T2 and 52 of 175 (30%) between T2 and T3 (Table 2; and Supplemental Table 1, https://links.lww.com/PCC/C268). Notably, 34 of 195 parents (17%) and 34 of 175 parents (19%) had sought psychiatric therapy at T2 and T3, respectively. No parents reported a diagnosis of PTSD.
PTSD Risk and Prevalence at 3–9 Months Post Discharge
Of the 195 of 265 parents (74%) who completed the follow-up assessments at T2, 29 of 195 parents (14.8%) met criteria for PTSD qualification. Univariate analyses are reported in Supplemental Tables 3 and 4 (https://links.lww.com/PCC/C268). Multivariable analysis at T2 showed significantly higher odds of meeting PTSD qualification in parents who met ASD qualification (OR 8.01; 95% CI 2.64–24.3), child POPC score of severe or coma at discharge (OR 5.21; 95% CI 1.65–16.4). The odds of PTSD increased with every score point increase in parental concerns about their child sustaining permanent injury (OR 1.82; 95% CI 1.36–2.43) or knowledge of their child’s illness (OR 1.82; 95% CI 1.13–2.93) (Table 3).
TABLE 3. -
Multivariable Logistic Regression Showing Risk Factors for the Development of Posttraumatic Stress Disorder
|Parent and Child Associated Vaariables, n = 183
|Parental concerns of permanent injury during admission (scale 1–7)
|Parent acute stress disorder diagnosis at discharge
|Pediatric Overall Performance Category at discharge
|Parental knowledge of child’s illness during admission (scale 1–5)
OR = odds ratio.
an = total participants. Some categories with less data due to incomplete forms.
PTSD Risk and Prevalence at 18–30 Months Post Discharge
Of the 175 of 265 parents (66%) who completed the assessment at T3, 22 of 175 (12.5%) met qualification for PTSD. Univariate analyses at T3 showed significantly higher odds of meeting PTSD qualification in parents who met ASD qualification (OR 4.92; 95% CI 1.78–13.6). Every score point increase in parental concerns about the possibility of their child’s death during admission (OR 1.42; 95% CI 1.09–1.83), parental concerns about permanent injury (OR 1.43; p = 0.002), or parental concerns that their child was more susceptible to death post discharge (OR 1.45; 95% CI 1.14–1.80) had increased odds of meeting PTSD qualification (Supplemental Tables 5 and 6, https://links.lww.com/PCC/C268).
Parents with a history of self or close family member ICU admission (OR 2.92; 95% CI 1.09–7.87), parents of children who required intubation (OR 3.73; 95% CI 1.31–10.6), or parents of children who required extracorporeal membrane oxygenation (OR 15.2; 95% CI 1.32–175) had increased odds of meeting PTSD qualification. Post discharge, parents of children with new home ventilation needs had significantly increased odds of meeting PTSD qualification (OR 6.13; 95% CI 1.75–21.5) (Supplemental Tables 5 and 6, https://links.lww.com/PCC/C268).
Multivariable analysis showed significantly increased odds of developing parental PTSD in parents who met ASD qualification (OR 4.19; 95% CI 1.12–15.7), in parents with a history of self or close family member ICU admission (OR 6.51; 95% CI 1.43–29.6), and per every score point increase in parent concerns of child susceptibility to death post discharge (OR 1.58; 95% CI 1.19–2.09) (Table 4).
TABLE 4. -
Multivariable Logistic Regression Showing Risk Factors for the Development of Posttraumatic Stress Disorder
|Parent and Child Associated Vaariables, n = 141
|Parent acute stress disorder diagnosis at discharge
|History of self or family member admitted to the ICU
|Family income percentage difference from zip code median (decrease from T2 to T3)
|Parent concern of child’s susceptible to death post discharge (scale 1–7)
OR = odds ratio.
an = total participants. Some categories with less data due to incomplete forms.
bThe median and mean family income per zip code was collected from the U.S. census 5-yr data averages (cite), and the parent household income percent difference from the zip code median was calculated to help normalize income by zip code.
PTSS Risk and Prevalence at 3–9 Months Post Discharge
Of the 195 parents who completed the follow-up assessments at T2, 82 (42%) met criteria for PTSS (Supplemental Table 7, https://links.lww.com/PCC/C268). Univariate analyses are reported in Supplemental Tables 3 and 4 (https://links.lww.com/PCC/C268). Multivariable analysis showed increased odds of meeting PTSS qualification in parents who met ASD qualification (OR 4.65; 95% CI 1.77–12.20), parents with a history of being abused (OR 5.87; 95% CI 2.13–12.30), parents of children diagnosed with a new medical condition at T2 (OR 4.64; 95% CI 1.75–10.90), and parents who met diagnostic criteria for mental health disorder on admission PHQ (OR 3.24; 95% CI 1.35–7.79). Every score point increase for parental concerns regarding their child’s potential death (OR 1.25; 95% CI 1.04–1.51) or child permanent injury during admission (OR 1.19; 95% CI 1.04–1.42) carried increased odds of developing PTSS (Supplemental Table 7, https://links.lww.com/PCC/C268).
PTSS Risk and Prevalence at 18–30 Months Post Discharge
Of the 175 parents who completed assessments at T3, 59 (33.7%) met criteria for PTSS at T3 (Supplemental Table 8, https://links.lww.com/PCC/C268). Univariate analyses are reported in Supplemental Tables 5 and 6 (https://links.lww.com/PCC/C268). Multivariable analysis showed significantly increased odds of meeting qualification for PTSS in parents who met ASD qualification (OR 10.6; 95% CI 3.56–31.3), parents of children with PICU readmission (OR 4.34; 95% CI 1.55–12.2), with every score point increase in parent concerns of child susceptibility to death post discharge (OR 1.51; 95% CI 1.25–1.83), and every year increase in child age (OR 1.12; 95% CI 1.04–1.21) (Supplemental Table 8, https://links.lww.com/PCC/C268).
Associated Outcomes With PTSD/PTSS
Parents who met PTSD qualification at T3 had significantly increased odds of reporting divorce or separation (OR 4.89; 95% CI 1.78–13.5) and a decrease in household income from T2 to T3 (OR 5.78; 95% CI 0.56–8.82) (Supplemental Table 3, https://links.lww.com/PCC/C268). Multivariable analysis showed significantly increased odds of PTSD qualification at T3 in parents reporting a decrease in household income from T2 to T3 (OR 9.23; 95% CI 1.71–49.9) post discharge (Table 4).
Parents who met criteria for PTSS at T2 had increased odds of reporting a new diagnosis of anxiety or depression post discharge (OR 2.70; 95% CI 1.31–5.57) (Supplemental Table 3, https://links.lww.com/PCC/C268). Parents who met criteria for PTSS at T3 had increased odds of reporting subsequent divorce or separation (OR 2.70; 95% CI 1.12–6.47), new diagnosis of anxiety or depression (OR 2.79; 95% CI 1.34–5.83), or a new parent medical diagnosis following discharge (OR 2.09; 95% CI 1.09–3.99) (Supplemental Table 5, https://links.lww.com/PCC/C268).
Trajectory of PTSD
One hundred sixty parents completed both T2 and T3. Eleven of 160 (7%) met PTSD qualification at T2 only, eight of 160 (5%) at T3 only, and 11 of 160 (7%) met PTSD qualification at both time points. Of the 19 of 160 parents (12%) who met PTSD at T3, 11 of 19 (58%) also met PTSD qualification at T2; thus, eight of 19 (42%) developed PTSD after T2. When looking at the eight who developed PTSD later, five of eight (63%) had met criteria for PTSS at T2. Of the 22 of 160 parents (14%) who met PTSD qualification at T2, 11 of 22 (50%) of them continued to meet PTSD qualification at T3. When examining the 11 of 22 parents (50%) who had resolution of their PTSD, seven of 11 (64%) met PTSS criteria at T3.
Of the 35 of 195 parents who completed T2 assessments but did not complete T3, seven of 35 (20%) met qualification for PTSD. Of the 15 of 175 parents who completed T3 assessments but not T2, three of 15 (20%) met qualification for PTSD.
AT THE BEDSIDE
- Parental PTSD is a significant comorbidity of a child’s PICU admission, with 12.5% of parents meeting PTSD qualification at 18–30 months post discharge.
- Identifiable risk factors such as the parents’ prior experiences, meeting criteria for acute stress disorder, and their concerns and perceptions during the admission informs the development of targeted screening and interventions at the bedside.
- Mitigating PICU associated parental PTSD is an essential component of family-centered care and improving postintensive care syndrome-pediatrics, additional studies should examine targeted interventions.
This prospective study evaluates prevalence and risk factors of PICU-associated parental PTS up to 30 months post discharge. Even if we assumed that all parents who were lost to follow-up at 18–30 months did not meet PTSD qualifications our rate would still be one in 12. The rate of greater than minimal PTSS was even more impressive at one in three parents at both timepoints. These findings suggest that parental PTSD and PTSS is a significant morbidity that threatens the recovery of PICU families up to and beyond 2 years post PICU discharge.
As reported by Muscara et al (5) and Yagiela et al (1), preadmission, admission, and postdischarge factors formed risk profiles distinguishing parents more likely to display resilience versus traumatic stress. Previously reported preadmission factors such as prior traumatic experiences and mental health disorders were significant risk factors for parental PTSD/PTSS at 3–9 months post discharge (25). However, we found only a close family member’s prior ICU admission remained a significant preadmission factor for parental PTSD qualification at 18–30 months post discharge. Overall, as compared to the PTSS/PTSD risk profile at 3–9 months, the PTSS/PTSD risk profile at 18–30 months was more heavily weighted in admission and postdischarge factors, representing continued or new stressors.
ASD was a strongly significant risk factor throughout the follow-up period representing an important opportunity for intervention both inpatient and shortly following discharge (26). Like previous studies, objective measures such as child illness score (PRISM III) was not associated with PTSD/PTSS qualification at any assessment. Instead, parental concerns and perceptions regarding their child’s illness and/or recovery while inpatient or susceptibility to death post discharge were strongly associated with parental PTSD/PTSS at every assessment (9,12,27).
Associated outcomes of parental PTSS such as new parent mental health diagnosis and reported financial hardship have been described (27). However, we are the first to report the association of PICU-associated parental PTSD with an actual decrease in family income and/or increased divorce/separation rates. Although we cannot determine causality, these data highlight the apparent detrimental association of PICU-associated parental PTSD on family recovery.
Unlike previously reported data, female gender, race, and education level of parents were not found to be significant risk factors for parental PTSD/PTSS at any evaluation time point. Race and education were possibly biased due to our inability to enroll parents who are non-English speakers and by a higher number of nonresponders being from a lower education level. However, given previous reports of higher PTSD/PTSS prevalence in these populations (9,25), our overall rate of PTSD/PTSS is likely underestimated rather than overestimated. Lack of significant PTSD/PTSS association with mothers in this cohort was surprising but has been reported previously by Rodríguez-Rey et al (25). We hypothesize that both the relatively high enrolment of fathers and increasing fluidity of traditional parental roles may have influenced our findings.
Awareness of PICU-associated parental PTSD is growing. Prevention of this morbidity should be at the forefront of the PICU treatment plan. Screening will allow for targeted interventions such as education on coping strategies during admission (13), family care rituals (28), and early psychiatric interventions such as cognitive behavioral therapy post discharge for those most at risk. We propose the following potential guidelines to be tested by future studies. The first screening time point for risk of PTSD should be on admission and include an assessment of previous traumatic experiences and mental health disorders (anxiety and depression). The second assessment time is at discharge and should include ASD screening and a brief evaluation of parental and child concerns regarding the PICU course. As a third (8/22) of parents met PICU-associated PTSD qualification for the first time at T3, we propose a third screening time point during subsequent outpatient visits.
There are limitations to this study. 1) Given research staff availability, we did not enroll all eligible parents/guardians, and the loss to follow up was ~ 20%. The effect of these nonresponders or missed enrollees cannot be fully predicted (Supplemental Table 2, https://links.lww.com/PCC/C268). However, significantly different characteristics between responders and nonresponders had no association with PTSD/PTSS, and affected parents who were unable to participate may have caused an underestimation of our results. 2) Respondents were interviewed months to years after the index admission, increasing the risk of recall bias. 3) There may have been intercurrent life experiences that could heighten the chance of meeting PTSD qualification which we did not account for. 4) The large timeframe (18–30 mo) for T3 allows for potential shifts in PTSS/PTSD diagnosis. However, the number of subjects 6 months prior and after 24 months was similar at 100 of 175 (57%) and 75 of 175 (43%), respectively. 5) We acknowledge that the PSS-I-5, despite proven validity against the Clinician-Administered PTSD Scale (convergent validity coefficient > 0.72), is not the gold standard for PTSD diagnosis. Therefore, we represent data for PTSD/PTSS qualification and not PTSD diagnosis. As described earlier, the ASDS-5 has not been fully validated. We communicated with the developer who is an expert in this field, he expressed that the small changes from the original scale should not significantly alter validity. 6) Our additional questionnaires, while vetted by PICU parents, physicians, and a clinical counselor for face validity, are not validated scales. 7) Despite being one of the largest cohorts in the PICU parental PTSD literature, this is a small sample size and is not powered to establish all possible risk factors contributing to the development of PTS. 8) Validated screens were only available in English; therefore, we were not able to enroll non-English speaking parents. 9) Last, this study was designed to establish potential risk factors and is not meant to determine causality.
PICU-associated parental PTS is a significant morbidity of PICU admission up to 2 years post discharge. Multiple identifiable risk factors may be assessed during and after admission allowing for early intervention. Inpatient identification and intervention of those most at risk are the next steps in mitigation of this disorder.
We thank Pamela S. Hinds, RN, PhD, FAAN, Mark L. Batshaw, MD, DC Lawyer’s Care for Children Endowment to Children’s National Hospital, Abraham Bartell, MD, MBA, and the parents of the children we cared for who were brave enough to allow us to better understand what they went through.
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