It took 3 years, 6 versions to develop ACEs screener that works for parents & providers

 

It’s irrefutable: Widespread research shows that adverse childhood experiences (ACEs) are common. That’s why researchers in a recent study insist: “It behooves pediatric providers to take an active role in preventing and identifying childhood adversity in order to reduce the health consequences of toxic stress.”

In other words, if you want your kids to have a good shot at a healthy life, make sure they — and you — are educated about and screened for ACEs and resilience.

In a recent study — “Implementation of the Whole Child Assessment to screen for ACEs” in the journal Global Pediatric Health, lead author Dr. Ariane Marie-Mitchell and her colleagues at Loma Linda University summarize the three-year journey of testing a screening tool for adversity through six iterations.

Central to the changes to the tool, known as the Whole Child Assessment (WCA), was direct feedback from doctors and parents. While soliciting feedback is a practical way to improve the quality of the tool, it was also a way to allow those involved in using the tool to have a voice, said Marie-Mitchell. (To learn more about the iterations of the WCA, read this story and this story.)

“It is also a fundamental principle of trauma-informed systems to foster empowerment and collaboration,” she said.

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Coauthors: Drs. Joshua Lee, Ariane Marie-Mitchell, Christopher Siplon 

The research was conducted from January 2015 through July 2017 during well child visits among five- to 11-year-old patients and their parents at a Federally Qualified Health Center staffed by residents in San Bernardino, CA. All of the patients are recipients of MediCal, the state’s Medicaid program, and the majority of patients identify as Hispanic or Latinx.

The most current iteration of the WCA includes 10 questions from the original CDC-Kaiser Permanente Adverse Childhood Experiences Study. This landmark study showed a remarkable link between 10 types of childhood trauma — such as witnessing a mother being hit, living with a family member who is addicted to alcohol or who is mentally ill, living with a parent who is emotionally abusive, experiencing divorce — and the adult onset of chronic disease, mental illness, being violent or a victim of violence, among many other consequences. The study found that two-thirds of the more than 17,000 participants, who were mostly white, had an ACE score of at least one, and 12 percent had an ACE score of four or more. (For more information, see ACEs Science 101and Got Your ACE (and Resilience) Score?) Subsequent ACE surveys include questions about experiences with bullying, the foster care system, losing a family member to deportation and being a war refugee, among other traumatic experiences.

The ACE Study is part of ACEs science, which comprises ACE surveys, how toxic stress from trauma caused by ACEs can damage children’s developing brains, how toxic stress from ACEs affects health, how toxic stress can be passed from generation to generation, and, most important, resilience — how the brain and body can heal.

While the WCA includes 10 questions from the original ACE survey, feedback from parents on the first draft of the WCA survey revealed that some of the language asking about ACEs needed to be changed. For example, the question about incarceration mirrored the language of the original ACE survey asking if anyone in the household had gone to prison, according to Marie-Mitchell.

“We found out through our waiting room surveys that families were answering ‘no’ because they identified ‘prison’ differently than ‘jail’,” she said. So, the question was changed to ask if anyone living in the household with the baby or child “had gone to prison, jail or any correctional facility, which made it more accurate and easier for families to match to their experience.”

(Since the publication of this article, the ACE questions on the WCA have been further updated here)

Parents were also reluctant to answer questions about socioeconomic status, including “In the past year, have you felt as if youdidn’t have enough to eat, had to wear dirty clothes….” One parent said: “I wouldn’t want the doctor to treat me differently because he knew I waited to buy milk.” Another said: “Parents might think they would be judged by the doctors if they were destitute and therefore their child might not receive quality care.”

So, the question was changed to:“In the past year, did you worry that your food would run out before you got money or food stamps to buy more?”

Feedback from pediatric faculty, residents and other health professionals also resulted in a more nuanced way of presenting other questions, according to the article. For example, one suggestion was not to use explicit language about sexual abuse. So, parents are asked if their child, “was ever touched, or asked to touch an adult or someone at least 5 years older sexually?” Left out was the other part of that question in the original ACE survey that asks about “oral, anal, or vaginal intercourse.”

For a better response rate, doctors and residents suggested that, in addition to answering “yes” or “no,” parents could answer “unsure.” By adding “unsure” it also opened up an opportunity for doctors to interact with their patients face-to-face to find out more.  

“For example, if the response to the domestic violence question is ‘unsure’, then the resident will ask ‘Can you tell me more about this?’ The resulting discussion helps to evaluate whether the safety concern is current or past, and whether that experience is impacting the child’s development or health,” said Marie-Mitchell.

While much of the article focuses on the ACEs part of the WCA, the WCA covers much more than ACEs. The reason: Form fatigue. There was a groundswell of consensus regardless of who weighed in— parents/caregivers, pediatric resident or faculty — that providers and patients are overburdened with forms and endless questions.  

To streamline the experience, Marie-Mitchell and colleagues combined ACEs questions with questions about tuberculosis and the Stay Healthy Assessment (SHA), a form that the California  Department of Health Care Services requires be given periodically to all MediCal recipients. The SHA asks questions related to nutrition, household safety, dental health and sleep habits, such as whether a baby is breast-fed or drinks formula, the number of wet diapers and bowel movements per day, and whether a child always sleeps on its back.  

The WCA has nine versions in English and Spanish that correspond to developmental stages from birth to 20-years-old, according to the Loma Linda University website. The WCA also includes questions about resilience, such as “Does your family look out for each other, feel close to each other and support each other?” The California Department of Managed Care gave its stamp of approval to WCA version 2.0 in November 2018, which could be used instead of the SHA. It is also one of three options recommended for use in California’s roll out of universal ACEs screening among its pediatric MediCal population. However, at this stage, the California Department of Health Care Services is not including its use to be reimbursed by the state. For more on that story, read here.

Marie-Mitchell said the next steps for use of ACEs screening will be to evaluate counseling and referral rates, and to see if clinical outcomes are impacted by ACEs screening.

And is the WCA an answer to form fatigue? “The important thing to note,” said Marie-Mitchell, “is that using the WCA did NOT lengthen the well-child visit duration.”

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