Painful Questions [imprintnews.org]

Even an author of the landmark 1998 study that propelled the current movement connecting adverse childhood experiences with adult diseases has spoken out. “The ACE questionnaire was designed to research — not screen — the relationship between childhood adversities and health and social outcomes,” epidemiologist Dr. Robert Anda wrote in the American Journal of Preventive Medicine in March. “The ACE score is neither a diagnostic tool nor is it predictive at the individual level.” 

A group of Canadian child health experts agreed in a 2019 commentary in the journal of the International Society for Prevention of Child Abuse and Neglect. The doctors noted that “along with others,” they have taken the position that the expanded use of ACEs questionnaires in clinical settings “is not justified based on evidence,” and has “substantial drawbacks.” The most common use of the screening tools, they stated, “fails to meet any of the standard screening criteria.” 

Given the range of needs identified by high ACEs scores — reflecting difficulty at home or in marginalized communities — screening is fundamentally different from rooting out the cause of a medical problem, pediatricians wrote in a 2016 Journal of the American Medical Association opinion piece. ACEs screening identifies “conditions that typically require resources well beyond the scope of clinical care,” the doctors asserted. “Screening for any condition in isolation without the capacity to ensure referral and linkage to appropriate treatment is ineffective and, arguably, unethical.”

In a June interview with The Imprint, Burke Harris said the tools used in California have been tested through market, provider and scientific research. California clinicians receive training and resources to fold the screening into comprehensive patient care, as part of the ACEs Aware initiative, an effort backed by the state’s Department of Health Care Services and Democratic Gov. Gavin Newsom. California has committed $141.5 million over two years to the statewide campaign offering different ACEs screening tools for patients of all ages.

With a pandemic raging and daily protests against police killings and racial injustice, Burke Harris said screening for ACEs is more important than ever: “Right now, children are experiencing ACEs. I believe deeply that when we know — that when there is a consensus of medical evidence that early detection and early intervention improves outcomes — then it’s critical for us to not just wait.” 

The surgeon general acknowledged critics’ concerns, but said those arguing with the screening approach haven’t offered up any alternatives. And failing to screen, Burke Harris said, is tantamount to saying: “Let’s just wait until they’re so badly off that they can’t sit still in a class anymore and learn. Let’s wait until their executive functioning is so impaired that they now become part of our justice system, or let’s wait until their health gets so damaged that they become part of the statistics of Black and brown lives that are foreshortened because of toxic stress.”

The origin story of ACEs

Research connecting childhood problems and poor adult mental health dates back to the 1950s. But in 1998, a seminal study emerged that Burke Harris has described as “a game changer.” For the study, epidemiologist Anda, then at the Centers for Disease Control and Prevention, and Dr. Vincent Felitti, the former head of preventive medicine at Kaiser Permanente, surveyed 17,000 Southern California patients. 

The San Diego residents were asked about everything from how many pregnancies and sexual partners they had, to whether they were ever spanked as a child, or felt someone in their family hated them. Questions included: Was anyone in your household depressed or mentally ill? Did anyone in your household attempt to commit suicide? How old were you when you had your first drink of alcohol other than a few sips? 

Study participants were mostly white and had been to college. Even among that population, more than 1 in 5 reported at least three ACEs. The study revealed that “exposure to abuse or household dysfunction during childhood” was a risk factor for seven leading causes of death in adults. It also led to alcohol and drug abuse, suicide, unintended pregnancies, fractures, burns and sexually transmitted diseases.

While the original ACEs study looked backward to make epidemiological findings, screening tools now being used in California ask physicians to identify future health risks and devise treatments.

Over the next year and a half, throughout Los Angeles County and in clinics from San Diego to Petaluma, Medi-Cal providers who complete a two-hour training can be reimbursed $29 for each patient screened for ACEs. Participation – by both doctor and patient – is voluntary. Participating clinicians are encouraged to supplement their usual care with patient education about the importance of supportive relationships, mental health treatment, regular exercise, high-quality sleep, good nutrition and mindfulness practices. 

California’s ACEs Aware initiative provides several screening forms, based on the age of the patient and whether the provider chooses to see the individual answers, or merely a final score. PEARLS is among the tools offered, a questionnaire developed by Burke Harris and pediatricians and researchers at the University of California, San Francisco School of Medicine. Late last year UCSF announced that PEARLS is available to 8,800 clinics and almost 100,000 physicians, nurse practitioners and midwives, and could improve the health of 7 million children on Medi-Cal through early detection and evidence-based interventions. 

An open question is whether already time-strapped doctors serving the roughly 1 in 3 Californians enrolled in  Medi-Cal will have additional time to both screen patients for ACEs and help treat potential issues that arise. The other larger question is how Medi-Cal doctors could possibly treat the causes of most ACEs.

Dr. Pat Rush, an internal medicine doctor for inner-city patients in Chicago, has spent the past 20 years treating complex chronic illnesses through a “trauma-informed” approach. Rush praised California for allocating resources to training health care providers about the impact of childhood trauma – something almost completely overlooked in most medical schools. 

But she said the necessary next step is addressing the roots of childhood adversity by “ensuring adequate health care and housing, a living wage, safe and supportive schools, reformed child welfare, home nursing support for new mothers, early childhood education and child care, and humane immigration policy – plus taking real steps to end structural racism, predatory policing, predatory financial services and mass incarceration.” 

And that, Rush said, is “a huge agenda – not a quick fix.”

Toxic stress in the pediatrician’s office

In her book “The Deepest Well: Healing the Long-Term Effects of Childhood,” Burke Harris describes the genesis of her screening mission, which she launched in 2007 from her former workplace in a humble clinic by the San Francisco Bay. Her patients, identified in the book by first name, included Diego, who grew up with sexual abuse, domestic violence and alcoholism, and suffered from eczema, failure to grow and attention-deficit disorder. He had an ACE score of 7. Another child, Trinity, had a mother who was addicted to heroin, made “only unpredictable cameo appearances in her daughter’s life” and had used her as a “decoy” while shoplifting. Trinity had an autoimmune disease and an ACE score of 6. And Kayla, who had asthma, saw her condition flare up when her dad punched holes in the wall — yet another sign of high ACEs, the pediatrician wrote. 

Through the stories of these children and their parents, Burke Harris shows how health and wellbeing improved when ACEs were identified and folded into the patient care plan.

Under stress, the human body produces higher levels of cortisol, the “fight-or-flight” hormone. Stress after a misfired text or a job interview goes away quickly and the body adjusts. But research shows that chronic exposure to stress pumps higher levels of cortisol into the bloodstream, which can disrupt the endocrine, metabolic, cardiovascular and immune systems.

Burke Harris grappled with how to head off these worrisome health outcomes as founder and medical director of the Bayview Child Health Center, located in an African American community that previously had just one pediatrician caring for more than 10,000 children. 

Among her patients was baby Nia, who had to be hospitalized for failure to thrive and whose mother, Charlene, struggled with postpartum depression. “I didn’t know for sure that Charlene was being overtly neglectful, not feeding Nia, or hurting her,” Burke Harris described. But given her persistent low weight, she knew the baby was “in the danger zone.” 

Burke Harris feared Nia’s mom was so depressed that she was not stimulating her baby through eye contact, facial expressions, snuggles and kisses — interaction that, if missing in infancy, can cause hormonal and neurologic damage and prevent normal growth and development, she wrote. 

So Burke Harris used her ACE-screening lens to treat her patient. “At the tender age of 5 months, with a depressed mom and a dad who wasn’t involved, Nia already had two ACEs,” she recounted in her 2018 book. “I had some strong suspicions that Charlene had an ACE score as well.” Burke Harris concluded “that toxic stress was more consistently transmitted from parent to child than any genetic disease I had seen.”

Eventually, in consultation with inpatient clinicians and “with a heavy heart,” Burke Harris had to report Charlene to CPS — leaving the young mother “understandably furious” with her daughter’s pediatrician. But “The Deepest Well” describes a hopeful outcome. In order to keep custody of Nia, Charlene was required to get intensive psychotherapy, and that led to better sleep and nutrition, healthier personal relationships and a deeper bond with her daughter. 

“Instead of just treating the symptoms of Nia’s failure to thrive, we had been able to treat the root of it,” Burke Harris wrote, “the stress caused by depression and trauma and an unhealthy family dynamic.”

Screening goes universal in California 

In 2019, Burke Harris took that inspiration and the ACEs screening tool to the office of the state surgeon general.

Unlike other 10-question ACEs tools, PEARLS includes seven additional questions, including whether children have experienced violence in their neighborhood, community or school – everything from bullying to war and terrorism. It asks whether children have endured discrimination, eviction, foreclosure, foster care or homelessness. Parents are asked whether they’ve ever run out of food or been separated from their children due to immigration policies. Depending on the total number of ACEs, patients are categorized as low, intermediate or high risk for toxic stress.

According to the California research team, 63.5% of state residents have experienced at least one adverse childhood experience, while 17.6% have experienced four or more – leading to illness that costs California roughly $113 billion in health care expenses a year. 

Los Angeles County doctors using the tool during the coronavirus pandemic say it has prompted parents to open up about housing, food and job insecurity. Dr. Shannon Thyne, director of pediatrics for the county’s Department of Health Services, said that in a matter of months, COVID-19 has become the new ACE: “It’s going to be something every child will have in their history.”

And her patients have appreciated the screening questions, Thyne said. She’s helped families find housing and get baby formula and diapers. In other situations where stressors were identified, she’s recommended deep breathing exercises or better sleep hygiene practices. 

“I have never seen patients be so responsive when asked about these personal issues,” she said. “Everybody is experiencing trauma, and they feel they can share what they’re going through without judgment.”

Since California began its statewide lockdown in March, Dr. Amy Shekarchi, who is co-lead for L.A. County’s screening project, has also used the questionnaire in telehealth appointments with families hard hit by the coronavirus pandemic. In Los Angeles, PEARLS is offered to parents of children who are 9 months, 18 months, 30 months and 12 years old. 

“I had a phone visit with a patient, and both parents have lost their jobs,” Shekarchi said. “But they were very receptive to the screening. As providers, by demonstrating that we care, that makes patients feel comfortable sharing with us. And the next time they have a need, they’ll feel comfortable going back to us.”

Critics fear unintended consequences 

State officials describe ACEs screening tools as well-established and safe for California’s Medi-Cal population of 14.5 million people.

Cate Powers, a spokesperson for the state Office of the Surgeon General, said the tools aren’t meant to be used on their own but as part of a comprehensive clinical assessment. Powers noted that the screening meets all 10 of the World Health Organization’s Wilson and Jungner Principles. The early disease detection criteria published in 1968 are widely used in public health “and are robustly applicable to ACEs and toxic stress,” she said.

According to a 2008 WHO bulletin, however, the measure long considered a gold standard has “at times been criticized for being too vague or theoretical,” and there have been “logistical, social or ethical reasons that preclude screening.”

But there is another worry among mental health experts when it comes to ACEs: its innate potential to simplify the complex ways that children experience life.

Child psychiatrist Bruce Perry, a neuroscientist at Northwestern University’s School of Medicine and one of the nation’s leading experts in treating trauma, described ACE screening tools as too simplistic for individual clinical work. He said they are more appropriately used for epidemiology studies and public awareness campaigns about childhood development. 

When used on patients in an exam room, Perry said ACEs screens are often misapplied and poorly explained, leaving people feeling “profound” violations of their privacy. In some instances he’s encountered, adult patients attribute too much to a high score — feeling they had discovered the reasons for being overweight, or having breast cancer, for example — chalking the health challenges up to things that happened in their childhoods, not what they needed to do now to address them. 

What’s left out of the health assessments, Perry said, are the myriad ways humans and their health are shaped by their experiences in life, “including the timing, pattern and intensity of adversities.” Above all, he added, what is not being measured in the screenings is the protective forces in a person’s life such as connection to family, community and culture: “A person’s history of connectedness is likely more important in determining their current health than their history of adversity.”

Jessica Dym Bartlett, who conducts research related to trauma for the nonprofit Child Trends, noted another common concern — that children from the same family may have identical ACEs but different health and behavioral outcomes. 

“Any two children, even twins, may have different reactions to adversity and trauma,” she said. “I’m concerned about taking all the kids who have been exposed to negative events and stigmatizing them with this label. Something like a divorce could be super-traumatic for one child but not for another.” 

Potential for CPS involvement

Although concerns about ACEs screening extend to patients of all ages, many critics are focused on pediatric uses — particularly in marginalized communities, where families of color are disproportionately scrutinized by child welfare authorities. The target population in California is patients on Medi-Cal, just 20% of whom are white, according to the California Health Care Foundation. 

Like many other professionals who come in contact with children, doctors and nurses are legally responsible for reporting signs of suspected abuse and neglect to Child Protective Services. In the pediatrician’s office, disclosures on ACE screening forms could lead parents to inadvertently share information resulting in a CPS investigation.

Depending on the physician, California parents are asked to share each of their answers on ACEs questionnaires, or provide only a final score in a “de-identified” format. In Los Angeles, both types have been used, said the county’s Dr. Thyne. But she added that during the pandemic’s mostly virtual visits, it’s easier for doctors to administer the identified version.

“If the score was high, we would do an immediate social work referral at our facility,” Thyne said. “The social worker would assess the need for a CPS referral.” 

ACEs screening can have great benefit, if child abuse reports protect vulnerable children, writes sociologist David Finkelhor in his 2017 study published in the International Child Abuse and Neglect journal. “But the state of current research on child abuse reporting does not foster confidence that it has net benefits,” given that most child abuse reports are not substantiated and that services provided through child welfare agencies have not proven to decrease abuse. 

“If general ACE screening were to result in a big increase in unnecessary and inherently expensive child welfare referrals and investigations as one of its main outcomes, we might look back on the ACE mobilization as a disastrous distraction to the development of evidence based child welfare policy,” the director of the University of New Hampshire’s Crimes against Children Research Center wrote. 

CPS investigations are conducted by child welfare agencies that have the power to remove children from their parents, and the scrutiny disproportionately targets Black and Native American families who have survived historic and barbaric injustice and family separation in this country — a context not lost on even those promoting the ACEs screening method.

UCSF professor of medicine Dr. Leigh Kimberg acknowledged that personal questions from health care providers, social workers, police officers and immigration officials can arouse legitimate suspicion and fear among parents. 

“Through the racism that’s built into the child welfare system, Black, Indigenous and children of color have been removed from their families at markedly disproportionate rates,” said Kimberg, a primary care provider at San Francisco General Hospital. “So these fears are justified.”

But she added that through ACEs screening, doctors can build trust with patients, passing along referrals for basic needs and providing other support when possible. Health care providers must also be upfront with patients about their legal obligations to report suspected child abuse or neglect, Kimberg said. 

A doctor’s personal journey with ACEs

Burke Harris, the daughter of Jamaican parents who raised their children in Palo Alto, California, uses her own story to show how a stressful childhood can be overcome with the right support. Burke Harris’ father was a biochemist and her mother a nurse, a woman she calls her role model and inspiration. But growing up, Hortense Hyacinth Burke suffered from paranoid schizophrenia, creating intense stress and anxiety at home for her children. 

“The problem was we never knew which mother we were going to get, every day after school it was like a guessing game. Are we coming home to happy mom or scary mom?” she writes in her book about developing treatments for ACEs. “When it was bad, well, it was pretty darn bad.”

In 1992, when she was a teenager, her brother Louis Burke — who was just a year apart in age — was also diagnosed with schizophrenia. Shortly thereafter, at age 17, he stepped out of their mother’s car at a stoplight and walked away. The family never saw him again, and he remains on the national missing persons registry.

Despite it all, Burke Harris has described adapting to the adversity, drawing on the strength of her father and her cultural heritage.

“I would never want to repeat the unpredictable or distressing parts of my childhood,” she wrote. “But I wouldn’t wish them away either, they’re a big part of what has made me who I am today.”

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