Adverse Childhood Experiences and Resilience in Childhood and Adolescent/Young Adult Cancer Patients

Abstract

Childhood and adolescent/young adult (AYA) cancer survivors experience poor health outcomes in adulthood. Adverse Childhood Experiences (ACEs) also portend poor health outcomes for the general population. Resilience can mitigate effects of ACEs. We examined the feasibility of assessing ACEs and resilience in childhood/AYA cancer patients. We also described occurrences of ACEs, resilience, and poor health outcomes. Of 52 participants, most rated their study experience favorably, with privacy in answering sensitive questions. Half reported ACEs, and those with ACEs had lower resilience, X²(3,N=52)=9.4,p=0.02. Further investigations of ACEs and resilience in larger cohorts are warranted to delineate associations with long-term health outcomes.

Introduction

Childhood and adolescent/young adult (AYA) cancer survivors report chronic diseases¹ and emotional distress² at higher rates compared to peers. Some of these long-term outcomes are partially explained by cancer treatments, which remain necessary to achieve cure.³ Others, such as chronic pain, can impact survivors regardless of treatment exposures.⁴ Therefore, it is critical to identify modifiable risk factors up front in childhood and AYA cancer patients to reduce sub-optimal long-term outcomes they experience as survivors.

Adverse Childhood Experiences (ACEs) are traumatic events occurring prior to age 18 that can undermine a person’s sense of safety and bonding.^5,6 ACEs are associated with chronic health conditions,⁷ poor mental health,⁸ and substance misuse⁷ in the general population. However, resilience, or harnessing resources to sustain well-being during adversity, can mitigate effects of ACEs.^9,10 Resilience has been studied in childhood and AYA cancer populations^11–13 and can be cultivated, providing a target for intervention to improve outcomes for those with ACEs.

To our knowledge, the impact of ACEs on health outcomes of childhood and AYA cancer patients has not previously been investigated. The influence of resilience on ACEs and health outcomes has also not been explored. Therefore, the purpose of this pilot study was to evaluate the feasibility and acceptance of assessing the sensitive subjects of ACEs and resilience in childhood and AYA cancer patients. We also described the occurrence of ACEs, resilience, and poor health outcomes (chronic health conditions, mental health issues, and substance misuse) in our cohort.

Methods

A convenience sample of patients 0-25 years old undergoing cancer treatment at the University of Chicago were approached. The University of Chicago is an urban, quaternary medical center, serving racial/ethnically- and socioeconomically-diverse patients.¹⁴ Participants ≥18 years old provided informed consent, and participants ≤17 years old completed the study with a parent/caregiver. All questionnaires were completed electronically using a tablet during clinic appointments.

Demographic, biologic, and behavioral variables were collected through self-report questionnaires. These included endorsement/denial of chronic health conditions, mental health issues, and substance misuse. To assess ACEs, participants ≤17 years old completed the “Pediatric ACEs Screening and Related Life-events Screener” either independent of a parent/caregiver (12-17 years) or with them (0-11 years).^5,15 Participants ≥18 completed the “ACE Questionnaire for Adults” alone.^5,15 Both include ten dichotomous items indicating presence/absence of each ACE. To assess resilience, participants ≤17 years old completed the “Child and Youth Resilience Measure” either independent of a parent/caregiver (12-17 years) or with them (0-11 years).¹⁶ Participants ≥18 completed the “Adult Resilience Measure” alone.¹⁶ These measures categorize social-ecological resilience based on a summed score: “Low” (≤62), “Moderate” (63-70), “High” (71-76), or “Exceptional” (≥77). Lastly, participants completed questionnaires for study feasibility/acceptability. These assessed their comfort during the study, sense of privacy, understanding/clarity of the instruments, and interest in ACEs and resilience. It also assessed technical difficulties.

Descriptive statistics characterized demographic, biologic, behavioral, and study feasibility/acceptability data. Two-sample t-tests and chi-squared tests evaluated differences in demographics, health behaviors and outcomes, and resilience based on ACEs.

Results

52 of 56 eligible participants completed the study (two refused; two had incomplete questionnaires). Our final sample was racial/ethnically-diverse (non-Hispanic white: n=25,48%) with equal sex representation (female: n=27,52%) (Table 1).

Table 1.

Demographic, biologic, treatment, and behavioral characteristics for study participants

	Participants (N = 52) n (%)
Sex
Female	27 (52%)
Male	25 (48%)
Race/Ethnicity
Non-Hispanic white	25 (48%)
Non-Hispanic black	14 (27%)
Hispanic	10 (19%)
Asian	3 (6%)
Age at primary malignancy diagnosis, in years (mean / SD / range)	13 ± 7 (0 - 25)
0-11 years old	19 (37%)
12-17 years old	15 (29%)
≥18 years old	18 (34%)
Age at assessment, in years (mean / SD / range)	134± 7 (0 - 25)
0-11 years old	18 (35%)
12-17 years old	14 (27%)
≥18 years old	20 (38%)
Primary malignancy diagnosis
Leukemia	30 (57%)
CNS tumor	3 (6%)
Hodgkin lymphoma	6 (11%)
Non-Hodgkin lymphoma	2 (4%)
Neuroblastoma	4 (8%)
Wilms tumor	2 (4%)
Soft tissue sarcoma	1 (2%)
Bone tumor	2 (4%)
Other*	2 (4%)
Treatment type
Surgery	16 (31%)
Radiation	7 (13%)
Chemotherapy	51 (92%)
Stem cell transplantation	4 (8%)
Other	3 (6%)
Health insurance
Private	36 (69%)
Medicaid	14 (27%)
Other	2 (4%)
Annual household income
Less than $20,000	11 (21%)
$20,000 to $49,999	5 (10%)
$50,000 to $99,999	12 (23%)
$100,000 to $149,999	7 (13%)
$150,000 to $199,999	4 (8%)
$200,000 or more	5 (10%)
Don’t know/Unsure	8 (15%)
Any chronic health condition	27 (52%)
Vision/Eye problems	16 (31%)
Hearing problems	0 (0%)
Speech problems	3 (6%)
Any endocrine	1 (2%)
Any cardiac/vascular	3 (6%)
Any respiratory	3 (6%)
Any GI/digestive	1 (6%)
Any renal	2 (4%)
Any brain/nervous system	3 (6%)
Any musculoskeletal	0 (0%)
Chronic pain	1 (2%)
Any psychiatric/mental health diagnosis	18 (35%)
Substance misuse
Tobacco use**	8 (15%)
Risky alcohol use***	12 (23%)
Recreational/Prescription drug use****	10 (19%)

^*For the “Other” subcategory, both participants were diagnosed with testicular germ cell tumors.

^**Endorsed current or former tobacco product use. Of note, all positive endorsements occurred in the ≥18 years old age subgroup.

^***Endorsed one or more episodes of consuming five or more drinks in a day (men/boys) or four or more drinks in a day (women/girls). Of note, all positive endorsements occurred in the ≥18 years old age subgroup.

^****Answered affirmatively for “How many times in the past year have you used a recreational drug or a prescription medication for nonmedical reasons? [Recreational drugs include methamphetamines (speed, crystal), cannabis (marijuana, pot), inhalants (paint thinner, aerosol, glue), tranquilizers (Valium), barbiturates, cocaine, ecstasy, hallucinogens (LSD, mushrooms), or narcotics (heroin)]” Of note, 9/10 positive endorsements occurred in the ≥18 years old age subgroup and one positive endorsement occurred in the 12-17 age subgroup.

Regarding feasibility/acceptability, most participants rated their study experience favorably (Table 2). Most felt prepared to answer study questions based on informed consent. Most felt comfortable and reported privacy in answering sensitive questions. None reported technical difficulties.

TABLE 2.

Feasibility/Acceptability responses

	Participants (N=52) n (%)
Rate your overall experience in the research study, where 0 is the worst possible experience, and 5 is the best possible experience
0 (worst)	0 (0%)
1	0 (0%)
2	0 (0%)
3	6 (11%)
4	16 (31%)
5 (best)	30 (58%)
How comfortable did you feel completing these surveys?
Very uncomfortable	2 (4%)
Somewhat uncomfortable	0 (0%)
Neither uncomfortable nor comfortable	5 (10%)
Somewhat comfortable	11 (21%)
Very comfortable	34 (65%)
How important do you feel it is for your cancer treatment team to know about your Adverse Childhood Experiences (ACEs) in order to take care of you?
Very unimportant	3 (6%)
Somewhat unimportant	3 (6%)
Neither unimportant nor important	9 (17%)
Somewhat important	12 (23%)
Very important	25 (48%)
How important do you feel it is for your cancer treatment team to know about your personal and community resilience factors in order to take care of you?
Very unimportant	1 (2%)
Somewhat unimportant	1 (2%)
Neither unimportant nor important	9 (17%)
Somewhat important	16 (31%)
Very important	25 (48%)
Did the informed consent and discussions you had before participating in the research study prepare you for your experience in the study?
No	1 (2%)
Yes, somewhat	3 (6%)
Yes, mostly	6 (11%)
Yes, completely	42 (81%)
I would be interested in learning more about Adverse Childhood Experiences (ACEs).
No	9 (17%)
Unsure	20 (38%)
Yes	23 (45%)
I would be interested in learning more about personal and community resilience factors.
No	8 (15%)
Unsure	21 (40%)
Yes	23 (45%)
Did you have enough physical privacy to complete this study?
Never	0 (0%)
Sometimes	1 (2%)
Usually	5 (10%)
Always	46 (88%)

Descriptively, 26 participants (50%) reported ACEs (mean total number of ACEs 1.3±1.7; range 0-7). The most common ACEs were emotional abuse (e.g., parent/caregiver repeatedly swore at/insulted/put down the participant; n=12), parental separation/divorce (n=11), and having a household member with substance misuse (n=8). Participants’ mean resilience score was 75±9 (range 49-85), indicating “High” resilience. Categorical breakdowns were: five scored “Low” (10%), eight scored “Moderate” (15%), ten scored “High” (19%), and 29 scored “Exceptional” (56%). Mean age at assessment differed between those with ACEs (16±6 years) and those without (12±8 years) [t(47)=−2.1,p=0.04]. Those with ACEs were more likely to self-endorse mental health issues [zero ACEs: n=4,15%; ≥1 ACE: n=11,42%; X²(1,N=52)=4.6,p=0.03] and substance misuse [zero ACEs: n=6,23%; ≥1 ACE: n=14,54%; X²(1,N=52)=5.2,p=0.02]. Participants with ACEs had lower resilience compared to those without; five participants with ACEs scored “Low” (≤62) compared to zero without, and ten participants with ACEs scored “Exceptional” (≥77) compared to 19 participants without [X²(3,N=52)=9.4,p=0.02]. There were no differences in sex, race/ethnicity, household income, insurance, and chronic health conditions between those with and without ACEs.

Discussion

Assessing the sensitive topics of ACEs and resilience was acceptable to our racial/ethnically- and socioeconomically-diverse cohort of childhood and AYA cancer patients and their parents/caregivers. Feasibility and participant acceptance are common concerns in research with sensitive subject matter, such as ACEs. Prior research has shown that even in well-documented cases of childhood abuse, retrospective studies likely provide underestimates of incidence.¹⁷ However, certain survey methodology choices, such as utilization of anonymous surveys and creation of perceived confidential environments to disclose ACEs can improve accuracy of reports.¹⁸ This provided rationale for administering electronic surveys to assess ACEs and resilience. Results from our study showed most participants were comfortable and prepared to answer survey questions following informed consent. This suggests that future studies of ACEs and resilience in larger cancer populations are feasible.

For our descriptive results, 50% of patients reported at least one ACE, similar to larger general population cohorts.^5,19,20 Those with ACEs were older compared to those without. Though most of the ACEs literature uses retrospective cohorts of adults,²¹ prospective accounts of ACEs from children less than 18 years old retain the ability to predict poor health outcomes in their futures.¹⁷ Participants with prior ACEs were more likely to endorse mental health issues and substance misuse compared to those without. Prior studies investigating relationships between ACEs and mental health demonstrated that repeated exposures to high-stress experiences in early childhood can lead to long-term disruptions in neuropsychiatric development.^22,23 Though previous studies show childhood cancer survivors engage in similar rates of substance misuse compared to peers,²⁴ AYA cancer patients who report multi-drug use are more likely to report mental health issues as well.²⁵ Participants with ACEs also had lower resilience scores compared to those without. Research has demonstrated that early adversity can be mitigated through teaching resilience.^26,27 Though studies mapping neurobiological pathways connecting ACEs, resilience, and health outcomes are ongoing,²⁸ research in the general population using “strength-based” interventions (e.g. focusing on positive attributes of a person/group rather than negative) to cultivate resilience in children and AYAs with ACEs have shown increased health-promoting behaviors.^29,30 Existing interventions promoting resilience in childhood and AYA cancer patients³¹ could be adapted for those with ACEs, encouraging posttraumatic growth after cancer therapy.³²

Limitations include the cross-sectional design of this study as well as our use of a convenience sample. Parental/Caregiver involvement in this study may have influenced responses from participants under age 18. Future studies utilizing larger, well-characterized cohorts of childhood and AYA cancer patients and survivors could distinguish the impact of ACEs and resilience from treatment-related effects on long-term health outcomes. Assessment of ACEs could also be incorporated into future pediatric and AYA clinical trials to examine their associations with various poor health outcomes. These data would inform interventions to aid those who have experienced ACEs to reduce additional morbidity and premature mortality for this high-risk population.

Previous Presentations.

1. Adverse Childhood Experiences (ACEs) in Newly-Diagnosed Childhood and Adolescent/Young Adult (AYA) Cancer Patients with Hematologic Malignancies. American Society of Hematology (ASH) Annual Meeting and Exposition. December 11-14, 2021. Link

2. Adverse Childhood Experiences (ACEs) and Resilience in Newly Diagnosed Childhood Cancer Patients. International Symposium on Late Complications after Childhood Cancer (ISLCCC). July 7-9, 2022. Link

Abbreviations

ACE

Adverse Childhood Experience

AYA

Adolescent and Young Adult