Feasibility and Challenges with Measuring Adverse Childhood Experiences in the Pediatric Intensive Care Unit

Abstract

Purpose

The Adverse Childhood Experiences (ACEs) screening tool captures some experiences of childhood adversity, ranging from abuse to parental separation. Research has shown a correlation between ACEs and both adult and childhood disease. This study evaluated the feasibility of conducting ACE screening in the pediatric intensive care unit (PICU) and investigated associations with markers for severity of illness and utilization of resources.

Methods

This was a cross sectional study screening for ACEs among children admitted to a single quaternary medical-surgical PICU. Children age 0–18 years old admitted to the PICU over a one-year period were considered for enrollment. A 10-question ACE screen was used to evaluate children for exposure to ACEs. Chart review was used to collect demographic and clinical data.

Results

Of the 432 parents approached for enrollment, 400 (92.6%) agreed to participate. Most parents reported an ACE score of zero (68.9%) while 31% of participants experienced at least 1 ACE, of whom 14.8% experienced ≥ 2 ACEs. There was not a statistically significant association between ACE score and length of stay (p-value = 0.26) or level of respiratory support in patients with asthma (p-value = 0.15) or bronchiolitis (p-value = 0.83). The primary reasons for not approaching families were parent availability, non-English speaking parents, and social work concerns.

Conclusions

This study demonstrates feasibility to collect sensitive psychosocial data in the PICU and highlights challenges to enrollment.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40653-023-00555-9.

Introduction

Childhood adversity, as defined by the World Health Organization, broadly includes childhood experiences of abuse, neglect, or exploitation (Butchart & Kahane, 2006). These events result in harm by causing an upregulation of the stress response during childhood especially if the adversity is repetitive or severe (Burke et al., 2011; Oh et al., 2018). In 1998 the Centers for Disease and Control (CDC) and Kaiser Permanente developed the Adverse Childhood Experiences (ACEs) screening tool to capture some of these childhood experiences (Felitti et al., 1998).

The landmark ACE study demonstrated a dose-response between childhood ACEs and adult disease. Patients with an ACE score ≥ 4 were 2.6 times more likely to develop chronic obstructive pulmonary disease and twice as likely to have cardiovascular disease compared to adults with an ACE score of 0 (Felitti et al., 1998). More recently, ACE scores have been linked to childhood disease including asthma, obesity and behavioral problems (Hägglöf et al., 1991; Pretty et al., 2013; Sandberg et al., 2004; Van Aart et al., 2018; Wing et al., 2015).

The relationship between ACEs and increased morbidity and mortality is likely secondary to neuroendocrine changes (McEwen et al., 1998; Nelson 2013; Ojard et al., 2015; Walker et al., 2017). Clinical data shows that exposure to early childhood adversity portends an increase in aberrant cortisol levels, inflammation, advanced cellular aging, and lower cognitive functioning in young children (Berens et al., 2017; Danese & McEwen, 2012; Shalev et al., 2012; Shankoff & Garner, 2012; Suor et al., 2015). Adequate immune and neuroendocrine response to disease is necessary to prevent critical illness and facilitate recovery (Menon & Lawson, 2007).

Despite this suspected association, ACE exposure has not been measured in the pediatric intensive care unit (PICU) where the stress response is essential. This gap in screening is likely due to the challenges of querying parents regarding sensitive topics in a high acuity setting. This study evaluates the feasibility of conducting ACE screening in the PICU. Based on current literature, higher ACE scores may be associated with increased need for ICU resources such as longer lengths of stay and increased respiratory support needs.

Methods

Design

This is a cross sectional study screening for ACEs among children admitted to a single quaternary medical-surgical PICU.

Participants

Children aged 0–18 years admitted to the PICU Jan 2019-Jan 2020 were eligible if their English-speaking parent or legal guardian was at the bedside. A PICU social worker screened eligible parents for appropriateness to approach. Given the psychological and emotional burden parents experience by having a child admitted to the PICU, these social workers are experienced in understanding parents’ psychosocial assessment and needs. Social workers recommended against approach if parents were deemed psychologically unstable during social work routine intake. The most common reasons that social workers deemed parents psychologically unstable were high patient acuity, patient near end of life, and open medical child abuse cases.

Enrollment

A pilot enrollment period of 40 subjects occurred from Jan 2019- June 2019. Social workers incorporated ACE screening into routine PICU intake. Upon evaluation, > 30% of subjects were deemed inappropriate to approach based on social/emotional stressors such as open medical child abuse evaluation or patient acuity. Study procedures were adjusted, including increased availability of research staff for enrollment and further defined psychological instability, allowing for enrollment of subjects even if the patient was of high acuity or near end of life. Following adjustments, 10% of subjects were deemed inappropriate.

Eligible parents were approached Monday-Friday 8am-5pm and attempts were made to locate parents twice daily. A waiver of informed consent was obtained from the Children’s National Institutional Review Board (Pro00011151).

Data Collection

Demographic and clinical data were collected from chart review. A 10-point ACEs questionnaire (Appendix A) was used, including three categories:

• Abuse: physical, emotional, and sexual.

• Neglect: physical and emotional.

• Household challenges: household with incarceration, mental illness, substance dependence, absence due to separation or divorce, intimate partner violence, or economic hardship.

Data Analysis and Statistical Considerations

ACE scores were dichotomized into high ACE (ACE ≥ 2) vs. low ACE score (ACE < 2) for evaluation of associations between demographical variables (gender, ethnicity, and insurance type) and clinical outcomes (length of stay and level of respiratory support). Levels of respiratory support were dichotomized as high (continuous positive airway pressure, bilevel positive airway pressure, mechanical ventilation) and low (none, supplemental oxygen, high flow nasal cannula). Level of respiratory support was chosen as an outcome measure because increased respiratory support, including intubation, is one of the most stressful and highly prevalent experiences in the PICU. Chi-square/Fisher’s exact test were used to examine the associations between categorical variables. Data with highly skewed distributions such as length of stay were evaluated using the Wilcoxon-Mann-Whitney test. Statistical analyses were performed using SAS for Windows version 9.2 (SAS Institute Inc., Cary, NC). Two-tailed p-value < 0.05 is considered as significant.

Results

Sample Demographics

Four hundred children aged 30 days to 18 years were included. Most participants were infants (44.9%) and children aged 2–12 (41.1%). The racial distribution was consistent with that of the Washington DC metro area, majority Black (49.4%) and Non-Hispanic White (30.8% Table 1).

Table 1.

Displays the general demographic data for patients in our sample

Patient Characteristics		N	Percent %
Gender
	Male	219	54.9
	Female	180	45.1
Age
	Infant (30 days- 2 years)	180	45.2
	Child (2 years- 12 years)	164	41.1
	Adolescent (13 years- 18 years)	55	13.8
Insurance
	None	12	3.0
	Medicaid	190	47.6
	Private	197	49.4
Race/Ethnicity
	African American/Black	197	49.4
	Hispanic/Latino	19	4.8
	Caucasian/white	123	30.8
	Other	60	15.0

Feasibility

There were 432 parents approached and 400 (92.6%) agreed to participate. Primary reason for declined participation was parental discomfort with the topic.

Overall, the most common reason parents were not approached included parent unavailability (39%), followed by non-English speaking (26%) and social work concerns for parental mental state (3%).

ACE Score and Clinical Outcomes

Most parents reported an ACE score of zero (68.9%), 31% reported at least 1 ACE, and 14.8% experienced ≥ 2 ACEs (Table 2). Adolescent age group (29% ACE ≥ 2 vs. 16% among children 2yo-12yo, p < 0.001) and Medicaid insurance (67% ACE ≥ 2 had Medicaid vs. 29% with private insurance, p < 0.005) were associated with higher ACE scores. There was not a statistically significant association between ACE score and hospital (p = 0.26) or PICU (p = 0.45) length of stay or level of respiratory support in patients with asthma (p = 0.15) or bronchiolitis (p = 0.83).

Table 2.

Displays the distribution of ACE scores

ACEs score	N	Percent %
0	275	68.9
1	65	16.3
2	24	6.0
3	19	4.8
4	11	2.8
5	1	0.3
6	2	0.5
7	1	0.3
8	1	0.3

Discussion

As the first study to measure ACEs in the PICU, this work demonstrates that collecting sensitive psychosocial information in this setting is feasible. The questionnaire was well received and 92% of approached parents were willing to participate. However, there are some cautions for future studies.

ACE scores in this sample were lower in PICU patients compared to ACE scores reported for non-PICU children nationally (Burke et al., 2011; Data Resource Center for Child and Adolescent Health, 2019) and there was not an association between severity of illness or resource utilization for patients with high ACE scores. These results are likely secondary to the sensitivities considered in this study’s methodologic approach rather than a true representation of ACEs in the PICU.

A primary limitation of this study is the sample population captured using the exclusion criteria. Study enrollment was limited to patients who had a parent at the bedside during business hours. Families with limited resources, single parent families and children in other special circumstances, such as those living at a group home may have been excluded from the study. Patients were also excluded, especially early in enrollment, when undergoing evaluation for medical child abuse or those with a dire prognosis due to perceived parental psychological state. It is possible these excluded children were likely at risk for higher ACE scores (Burke et al., 2011; Felitti et al., 1998).

A second concern was with accuracy of the data. While the study was generally well accepted by families and processes were in place to promote anonymity, it is possible that families are not ready to share this information in this setting. Almost 70% of parents reported an ACE score of zero, while the national average is 60% (Data Resource Center for Child and Adolescent Health, 2019). Having such a limited sample of patients with increased ACE scores likely also makes this lack of association with severity of illness inaccurate.

The ACEs questionnaire used may not have captured the complex variables that are present in the PICU. For example, the instrument does not uncover multiple extreme episodes of a single type of adversity. Furthermore, recent studies have pointed out that the current ACE questionnaire doesn’t account for the many types of trauma these children may experience; suggesting lockdown from COVID 19 may be included as an ACE (Cronholm et al., 2015; McManus & Ball, 2020). Emerging research has discussed expanding the screen to include racism, community violence, and other adversities (Cronholm et al., 2015).

The ACE instrument has been beneficial as a public health research tool, reinforcing the importance of trauma informed care. This study demonstrates that it is reasonable and acceptable to address sensitive psychosocial risk factors in the PICU. Future researchers may consider strategies to better engage vulnerable populations, such as phone enrollment, translation for non-English speaking families, quality assurance of data, and expansion of eligibility.

Electronic Supplementary Material

Below is the link to the electronic supplementary material.

Funding

Alpha Omega Alpha Postgraduate Award. September 2019. National Office: 12,635 E Montview Blvd., Suite 270. Aurora, CO 80,045.

Declarations

Conflict of Interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Meeting Presentations

Derck J, Maddock R, Phipps A, Gilmore G, October T. Adverse Childhood Experiences (ACEs) Screening in the Pediatric Intensive Care Unit. American Academy of Pediatrics National Meeting. New Orleans, LA. October 2020.

IRB

Children’s National IRBear, Pro00011151