CYW ACE-Q (User Guide) PDF
CYW ACE-Q (User Guide) PDF
CYW ACE-Q (User Guide) PDF
Lead Authors
Nadine Burke Harris, MD, MPH
Todd Renschler, PsyD
Acknowledgements to
Center for Youth Wellness (CYW)
Clinical, Research, Strategic Initiatives, Data and
Organizational Learning teams, (2012-2015)
Bayview Child Health Center (BCHC) staff
including Medical Assistants and Pediatricians
Leadership High School students
and instructor Tiffani Johnson
CYW Community Advisory Council (CAC)
CYW Community Research Board (CRB)
Suggested Citation
Burke Harris, N. and Renschler, T.
(version 7/2015).
Center for Youth Wellness ACE-Questionnaire
(CYW ACE-Q Child, Teen, Teen SR). Center for
Youth Wellness. San Francisco, CA.
Lead Authors
Monica Bucci, MD
Lisa Gutiérrez Wang, PhD
Kadiatou Koita, MS
Sukhdip Purewal, MPH
Sara Silvério Marques, DrPH, MPH
Nadine Burke Harris, MD, MPH
Acknowledgements to
BCHC-CYW Learning Collaborative
CYW Communications team
Suggested Citation
Bucci M, Gutiérrez Wang L, Koita K, Purewal
S, Silvério Marques S, Burke Harris N. Center
for Youth Wellness ACE-Questionnaire User
Guide. San Francisco, CA: Center for Youth
Wellness; 2015
CYW ACE-Q USER GUIDE
INTRODUCTION
Over the past several decades emerging research has revealed
early adversity as a major threat to health and well-being across
the life course. Adverse Childhood Experiences, or ACEs, have
been linked to poor health outcomes in adulthood, and there is
growing literature indicating that toxic stress caused by ACEs
can profoundly alter child and adolescent development.
The Center for Youth Wellness (CYW) was created to
respond to the new medical understanding of how early
life adversity harms the developing brains and bodies of
children. In partnership, the Bayview Child Health Center
(BCHC), a primary care pediatric home serving children
and families in the Bayview Hunters Point neighborhood
in San Francisco, and CYW provide an integrated pediatric
care model aimed at addressing both the physical and
behavioral health needs of families exposed to ACEs.
The CYW ACE-Q and User Guide have been made available
to primary care providers for the purpose of information
sharing. The CYW ACE-Q is free and is intended to be used
solely for informational or educational purposes. The
CYW ACE-Q is not a validated diagnostic tool, and is not
intended to be used in the diagnosis or cure of any disease.
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CYW ACE-Q USER GUIDE
TABLE OF CONTENTS
Background 4
References 19
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CYW ACE-Q USER GUIDE
BACKGROUND
ADVERSE CHILDHOOD EXPERIENCES
Adverse Childhood Experiences (ACEs) are stressful or traumatic events experienced before age 18. They
are grouped into three categories: abuse, neglect, and household dysfunction1,2.
Sexual Divorce
The term, “ACEs,” was coined in 1998 following the publication of the Adverse Childhood Experiences
Study (ACE Study). The study was groundbreaking in that it found that ACEs were not only common within
the population, but were strongly related to the development and prevalence of numerous health prob-
lems1. The ACE Study was the first to assess physical health outcomes related to these particular adver-
sities in a large study population.
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CYW ACE-Q USER GUIDE
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CYW ACE-Q USER GUIDE
TOXIC STRESS
Although the causal mechanisms linking childhood adversity to poor health outcomes are still being
explored, scientists now understand that a maladaptation of the physiological stress response system
plays an important role in negative long-term health outcomes.
Physiological Stress Response. Stress is the phys- glucose and fat to be used as an energy source.
iological and behavioral response elicited by selec- These changes prepare the body for a “fight” or
tive pressure from the physical and social environ- “flight” response.
ment that challenges and disrupts homeostasis
— the self-regulating process biological systems The activation of the HPA axis results in a cascade
have in place to maintain the internal stability for of hormonal release. Once activated, the neurons
survival 12,13. While the experience of stress is influ- in the hypothalamus synthesize and release a
enced by many factors - including the intensity and hormone called the corticotropin-releasing factor
severity of the stressor, the individual’s perception (CRF). This hormone travels to the pituitary gland
of the stressor, physical and mental health, and through hypophysial portal vessels. The binding of
genetic makeup - the physiology of the response CRF to its receptors induces the release of the ad-
involves the activation of the neuro-endocrine-im- reno-corticotropic hormone (ACTH) in the systemic
mune (NEI) network. This NEI network is comprised circulation. ACTH, then, targets the adrenal glands
of the autonomic nervous system (sympathetic and and induces the secretion of glucocorticoids (cor-
parasympathetic), the hypothalamic-pituitary-adrenal tisol) from the adrenal cortex18. Cortisol release is
(HPA) axis, and the immune system. responsible for many of the changes occurring in
the body, a phenomenon that appears to be par-
In the face of an acute stressor, the neurons in the ticularly pronounced during experiences of chron-
amygdala— the part of the brain responsible for ic stress19. Some of the effects of cortisol include
emotions, especially fear, regulation of attention activation of the natural immune response through
and modulation of memory—are activated. The the granulocytes (neutrophils, macrophages, mast cell,
amygdala receives and interprets the present situa- and eosinophils), the natural killer cells, and the com-
tion as a threat and sends signals to the hypothal- plement proteins. Their actions are inflammation,
amus, which in turn activates the HPA axis 14,15. The destruction of the invaders with oxygen radicals,
hypothalamus activates the sympathetic nervous and phagocytosis. The macrophages also produce
system response by sending signals through sym- pro-inflammatory cytokines (messenger molecules)
pathetic nerves to the adrenal medulla and trigger- such as the interleukin 1 and 6 (IL-1, IL-6), and tumor
ing the secretion of catecholamines (epinephrine and necrosis factor (TNF) that produce inflammation
norepinephrine also known as adrenaline and noradrena- and promote wound healing20.
line) into circulation. This results in a constriction
of the blood vessels, increase in blood pressure, Once the exposure to the stressor is discontinued,
increase in heart rate and force of cardiac contrac- a negative feedback inhibition shuts down the
tion, increased muscle tone, and bronchial dilation stress response. The body’s continuous actions
with increase in the respiratory rate16,17. The circu- to maintain homeostasis through these changing
lating adrenaline also triggers the release of stored conditions, has been termed as allostasis21.
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CYW ACE-Q USER GUIDE
The American Academy of Pediatrics (AAP) has described three general categories of stress response:
POSITIVE STRESS RESPONSE A normal and essential part of healthy development. It is characterized
by brief increases in heart rate and blood pressure, as well as mild eleva-
tions in hormonal levels. When children are exposed to a stressor as part
of their development, such as the first day of school or a school test, in
the presence of a caring relationship with an adult who provides protec-
tive effect to cope with the stressor, after the initial activation, the physio-
logical stress response shuts down through negative feedback, once the
child is no longer exposed to the stressor22.
TOLERABLE STRESS RESPONSE The body’s alert systems are elevated to a greater degree. The activation
is time-limited and buffered by a caring adult relationship. This allows the
brain and organs to recover22.
Occurs with
TOXIC STRESS RESPONSE strong, frequent or prolonged adversity. It is characterized
by disruption of brain architecture and other organ systems. Toxic stress
is associated with increased risk of stress related disease and cognitive
impairment23.
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CYW ACE-Q USER GUIDE
Universal screening for ACEs is critical. For some children the effects of toxic stress are seen in externaliz-
ing behaviors, such as poor impulse control and behavioral dysregulation. In these children, externalizing
behaviors may be symptoms of the neurodevelopmental impacts of toxic stress. Routine screening offers
the opportunity to identify individuals at high risk and offer Anticipatory Guidance before the child be-
comes symptomatic. In addition, there are also individuals who do not exhibit any externalizing behaviors,
and are still at increased risk of developing poor health outcomes.
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CYW ACE-Q USER GUIDE
ADVERSE
CHILDHOOD
EXPERIENCES
QUESTIONNAIRE
CYW ACE-Q
INSTRUMENT DESCRIPTION
Based on the instrument created by Vincent Felitti and Robert Anda for use with adults28, the CYW Ad-
verse Childhood Experiences Questionnaire (CYW ACE-Q) is a clinical screening tool that calculates cumu-
lative exposure to Adverse Childhood Experiences (ACEs) in patients age 0 to 19. Respondents are asked
to report how many experience types (or categories) apply to them or their child, not which experiences
apply (i.e. it is de-identified). The CYW ACE-Q is intended for use in pediatric and family practice settings to
identify patients at increased risk for chronic health problems, learning difficulties, mental and behavioral
health problems and developmental issues due to changes in brain architecture and developing organ
systems brought on by exposure to extreme and prolonged stress. The tool is available in three age-spe-
cific versions, and in English and Spanish. It takes approximately two to five minutes to complete.
2. CYW Adverse Childhood Experiences Questionnaire for Adolescents (CYW ACE-Q Teen)
19 item instrument completed by the parent/caregiver for youth age 13 to 19
3. CYW Adverse Childhood Experiences Questionnaire for Adolescents : Self Report (CYW ACE-Q Teen SR)
19 item instrument completed by youth age 13 to 19
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CYW ACE-Q USER GUIDE
INSTRUMENT STRUCTURE
The instrument is comprised of two sections: Section 1 of the CYW ACE-Q (i.e. items #1-10) consists of
the traditional ten ACEs for which we have population-level data for disease risk in adults. Section 2 in-
cludes seven (CYW ACE-Q Child) or nine (CYW ACE-Q Teen and CYW ACE-Q Teen SR) items assessing for exposure
to additional early life stressors identified by experts and community stakeholders. These items are hy-
pothesized to also lead to disruption of the neuro-endocrine-immune axis, but are not yet correlated with
population level data about risk of disease. They include involvement in the Foster Care system, bullying,
loss of parent or guardian due to death, deportation or migration, medical trauma, exposure to community
violence, and discrimination.
SECTION 2 Seven or nine items assessing for exposure to additional early life stressors
relevant to children/youth served in community clinics
SCORING
As an instrument calculating cumulative exposure to categories of adversity, the respondent is asked to
report how many categories apply to them or their child. Respondents tally the number for each section
and write the total in the box provided. Each completed CYW ACE-Q generates a two number score, for
example, a score of 3+2 (three categories endorsed in Section 1 and two endorsed in Section 2) or 4 + 4 (four categories
endorsed in each section).
PLEASE NOTE: As a clinical tool, BCHC-CYW uses the CYW ACE-Q total score (Section 1+ Section 2) to identify
which patients are at high risk of health and developmental concerns. The traditional ACEs (Section 1) and
additional items (Section 2) are kept separate in the CYW ACE-Q for purposes of research and evaluation.
Specifically, BCHC-CYW is collecting traditional ACE data to assess whether the integrated pediatric care
model results in a decreased risk of adverse health and developmental outcomes.
ADMINISTRATION
The CYW ACE-Q is either an informant (CYW ACE-Q Child and CYW ACE-Q Teen) or self-report (CYW ACE-Q Teen
SR) instrument. It is presented to the parent/caregiver and/or youth upon check-in for standard medical
appointments. It is administered to all new patients, 9 months and older, prior their first appointment, at
the 9- and 24-month Well Child Check, and yearly thereafter (see Table 2. Administration Schedule).
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CYW ACE-Q USER GUIDE
The instrument is introduced by the Medical Assis- The following steps are taken to administer the
tant. The following steps are taken to administer CYW ACE-Q Teen and CYW ACE-Q Teen SR (for pa-
the CYW ACE-Q Child (for patients 0-12 years of age): tients 13-19 years of age):
1. Medical Assistant greets and welcomes the care- 1. MedicalAssistant greets and welcomes the pa-
giver and patient. tient and caregiver.
2. Medical Assistant informs the caregiver that 2. Medical Assistant informs them that they will
they will need to fill out several forms prior to need to fill out several forms prior to the appoint-
the child/youth’s appointment. The packet is ment. The patient and caregiver each receive a
provided on a clipboard. We recommend that the separate packet on a clipboard. They are asked
CYW ACE-Q be included earlier in the packet to to complete the forms separately. As with the
increase completion rate and reinforce the clini- CYW ACE-Q Child, we recommend that the CYW
cal model (screen-counsel-refer). ACE-Q Teen and CYW ACE-Q Teen SR be included
earlier in the packet to increase completion rate
3. TheMedical Assistant provides a general de- and reinforce the clinical model (screen-counsel-re-
scription of each form in the packet, providing fer).
context. S/he informs the caregiver that the Pri-
mary Care Provider will review the results with 3. TheMedical Assistant provides a general de-
her/him and the child/youth. scription of each form in the packet, providing
context. S/he explains that the Primary Care Pro-
4. The caregiver completes the packet and returns vider is interested in obtaining information from
it to the Medical Assistant. both their perspectives. S/he also informs them
that the Primary Care Provider will review the re-
5. The
packet is provided to the Primary Care Pro-
sults with them during the appointment.
vider for review prior to the appointment. The Pri-
mary Care Provider reviews the information prior 4. Thepackets are returned separately to the Medi-
to meeting with the patient. cal Assistant upon completion.
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CYW ACE-Q USER GUIDE
INTRODUCTION OF THE PACKET We have some forms that we’d like for you to complete so that the
doctor understands how Child’s Name is doing. The doctor will an-
swer any questions you have about the forms, and I’m here if you need
clarification on the instructions.
There are X forms in this packet and we give these forms to all of our
patients. (Present other forms as routinely done.)
When you have finished, return the forms to me. I will place everything
in a folder and give it to the doctor before you and Child’s Name go in
for your visit.
PLEASE NOTE: If the patient is a teen (age 13-19), the Medical Assistant will ask
both the parent/caregiver and the teen to complete their respective forms (i.e.
CYW ACE-Q Teen and CYW ACE-Q Teen SR) separately so the doctor can under-
stand both perspectives.
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CYW ACE-Q USER GUIDE
INTERPRETATION OF RESULTS
The completed CYW ACE-Q will have two scores: one for Section 1 (original ten ACEs), and another for Section
2 (supplementary items). If the patient’s CYW ACE-Q score from both Section 1 and Section 2 equals zero to
three (0-3) and the patient does not present with additional symptomatology (see Relevant Symptomatology
listed below), the Primary Care Provider should provide Anticipatory Guidance. If the patient’s score is one to
three (1-3) with symptomatology, or four or higher, an appropriate referral to care should be made.
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CYW ACE-Q USER GUIDE
GENERAL INTRODUCTION New research has shown that children’s exposure to stressful or trau-
TO THE CYW ACE-Q RESULTS matic events can lead to increased risk of health and developmental
problems, like asthma and learning difficulties. As a result, at this
clinic we now screen all of our patients for Adverse Childhood Expe-
riences. Once again, you don’t have to tell us which ones your child
experienced, only how many. I’d like to take a moment to review your
responses.
CYW ACE-Q SCORE OF 0 Based on your responses, I don’t see any cause for concern. We now
understand that exposure to stressful or traumatic experiences like
the ones listed here may increase the amount the stress hormones
that a child’s body makes and this can increase their risk for health
and developmental problems. If, in the future, [Child’s Name] experienc-
es any of these issues, please let us know because early intervention
can lead to better outcomes.
CYW ACE-Q SCORE 1-3 I see that [Child’s Name] has experienced [CYW ACE-Q Score] of these
WITHOUT SYMPTOMATOLOGY items, is that correct? Based on your responses, I want to ask a few
more questions about her/his health and development. Has [Child’s
Name] experienced any significant weight gain or loss since these ex-
periences occurred? How is [Child’s Name] doing in school? Has the
teacher or school staff expressed any concerns? How’s [Child’s Name]
sleep? Have you noticed any worsening of your [Child’s Name]asthma/
eczema/diabetes since these events occurred?
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CYW ACE-Q USER GUIDE
CYW ACE-Q SCORE 1-3 I see that [Child’s Name] has experienced [CYW ACE-Q Score] of these
WITH SYMPTOMATOLOGY or items, is that correct? Based on your responses, I want to ask a few
CYW ACE-Q SCORE 4 or MORE
more questions about her health and development. Has [Child’s Name]
experienced any significant weight gain or loss since these experienc-
es occurred? How is [Child’s Name] doing in school? Has the teacher
or school staff expressed any concerns? How’s [Child’s Name] sleep?
Have you noticed any worsening of [Child’s Name] asthma, eczema, di-
abetes since these events occurred?
Some of the things that have been shown to help the body recover
from adversity and normalize those stress hormones include good nu-
trition, healthy sleep, regular exercise, therapy, mindfulness- like med-
itation, and healthy relationships.
I’d like to refer [Child’s Name] to some services that could be helpful.
(Describe referral and resources available at your setting. This may include a “warm
hand-off” or formal referral to an internal mental health or behavioral health pro-
vider integrated into the clinic, or may be a referral to a partner agency.)
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CYW ACE-Q USER GUIDE
Given this framework, Primary Care Providers and/or Clinic Managers planning to integrate the CYW
ACE-Q into clinical practice may consider the following steps:
1. Gain an understanding of the background and rationale for screening for ACEs
A. Review additional resources on ACEs and Toxic Stress, for example, literature cited throughout
this document to better understand the relationship between exposure to Adverse Childhood
Experiences (ACEs) and negative health outcomes.
2. Understand the context and feasibility for integrating the CYW ACE-Q into your practice setting
A. Vision
I. Initiate discussions with supervisors/managers and senior leadership to gauge interest and possible concerns.
II. Determine how the integration would work within your existing model and how it would connect to the mis-
sion and goals of your organization.
IV. Evaluate existing systems and processes to ensure compliance with state and other regulatory bodies.
V. Develop plans for collecting and evaluating data to assess implementation success.
B. Resources
I. Evaluate what staffing support is needed to integrate the CYW ACE-Q. For example, from an administrative
perspective, the CYW ACE-Q will increase workload of staff collecting and managing the health data.
II. Identify internal or external resources for patients requiring behavioral health services or other supports.
Understand what community partnerships exist and/or must be developed to support in planning, implemen-
tation and response to the integration of screening for ACEs is essential. Warm handoffs have been known
to be effective in linking primary health care and specialized services; a relatively quick turnaround time is
preferred for patients to engage in special services.
III. Understand what training and professional development needs are required for staff. For example, trainings
on trauma-informed care, vicarious trauma, conflict resolution, and mandated reporting should be incorpo-
rated, along with consistent supervision.
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CYW ACE-Q USER GUIDE
Care Coordination is at the heart of the CYW clinical model. Our approach is distinct from traditional case
management in that each of our Care Coordinators is trained to interact and respond to patients using an
ACEs-informed lens. This means educating families and other providers about the impacts of ACEs and
toxic stress on health, engaging families at home and school, providing consistent guidance, modeling
self-care, and making referrals as needed. Care Coordinators are responsible for the families’ care and
they coordinate care within BCHC-CYW programs and with outside resources.
We provide a variety of carefully coordinated mental health and wellness interventions to address the
impact of ACEs and toxic stress. These interventions are guided by a multidisciplinary, two-generation
approach and include:
ASSESSMENT We screen children for exposure to adversity and assess symptoms of toxic stress
in the pediatric setting.
HOME VISITS We engage families at home and school, as many families lack access to child-
care and transportation.
EDUCATION We offer targeted education that helps families better understand the causes and
symptoms of chronic stress and provide ways to mitigate the kind of stress that
can hurt children’s health and well-being.
WELLNESS NURSING Nurses provide education to families about the impacts of ACEs and toxic stress
on health and wellness. They coordinate Specialty Care appointments, often ac-
companying patients/families to see specialists. Provide consultation on strate-
gies for attaining, maintaining, or recovering optimal health.
BIOFEEDBACK We provide biofeedback services to build awareness and control over body pro-
cesses such as muscle tension, blood pressure, and heart rate to help patients
recognize and better regulate their fight or flight response.
REFERRALS In addition to making appropriate referrals for our clinical services, we also co-
ordinate referrals to high-quality institutional partners who also use an ACEs-in-
formed lens in their work.
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