Imagine that the next time you go in for a physical, you're told there's a new tool that can estimate your risk for many of the major health problems that affect Americans: heart disease, diabetes, depression, addiction, just to name a few.
It's not a crystal ball, but might hint at your vulnerability to disease and mental illness — long before you start smoking or drinking, gain a lot of weight, develop high blood pressure or actually get sick.
And all you have to do is answer 10 yes-or-no questions about your childhood:
Answering those questions would give you an "adverse childhood experiences" score (or ACE score, for short). The test's proponents say that it provides a rough measure of a tough childhood, and some of the experiences — death of a parent, childhood abuse or neglect — that can have long-term effects on your health.
Dr. Vincent Felitti of the University of California, San Diego, who did much of the research that gave rise to the ACE score, thinks the tool is so useful it should be part of a routine physical exam. But it's not, for a variety of reasons.
For one thing, doctors aren't taught about ACE scores in medical school. Some physicians wonder what the point would be, as the past can't be undone. There also is no way to bill for the test, and no standard protocol for what a doctor should do with the results.
But Felitti thinks there's an even bigger reason why the screening tool largely has been ignored by American medicine: "personal discomfort on the part of physicians."
Some doctors think the ACE questions are too invasive, Felitti says. They worry that asking such questions will lead to tears and relived trauma ... emotions and experiences that are hard to deal with in a typically time-crunched office visit.
I wondered if those concerns were warranted, so with the permission of the patient and the doctor, I sat in on an appointment.
Bonnie Ratliff, a mother of two in her 30s, met with Felitti at Kaiser Permanente in San Diego, where he did his research more than 15 years ago with the Centers for Disease Control and Prevention.
As Felitti talked with Ratliff, he went over the extensive, customized medical history form she'd filled out before the appointment — a form that included the ACE questions. Felitti asked Ratliff about her mother's nervous breakdown, and the drinking and hoarding that followed it.
"It was hard, you know? It was especially hard because she made us keep it a secret," Ratliff said.
Ratliff also explained that she was molested once, as a kid, although she didn't think that had affected her in a lasting way.
It took about a half hour to go over everything — which included some issues with irregular heartbeat, weight gain, allergies and an eye problem, in addition to the questions about Ratliff's childhood. It took a bit longer than a typical doctor's appointment, but otherwise wasn't so different. Despite the intimate content of the conversation, Ratliff never got upset.
"You don't feel like you have to bare your emotions, you know?" Ratliff said afterward. "If it's just, like, just a checklist, and you can just check off these things that have happened to you — 'yep, yep, yep' — it doesn't feel so scary."
Felitti hadn't even mentioned the term "ACE score," or told Ratliff what her score was — 4 out of 10 — but he methodically had asked her how she thought each adverse childhood experience had affected her. After the appointment, Ratliff said that as she spoke with Felitti, something clicked into place.
"I've done a lot of thinking about how my childhood experiences have turned me into the person I am, how I still carry them with me," she said. "I haven't necessarily connected it, for the most part, to physical issues before this."
That's the point, Felitti believes: Asking patients about ACEs helps patients understand their health more deeply, and helps doctors understand how to help.
According to Dr. Jeff Brenner, a family doctor and MacArthur Fellows award-winner in Camden, N.J., getting these rough measures of adversity from patients potentially could help the whole health care system understand patients better.
The ACE score, Brenner says, is "still really the best predictor we've found for health spending, health utilization; for smoking, alcoholism, substance abuse. It's a pretty remarkable set of activities that health care talks about all the time."
Brenner won his MacArthur fellowship in 2013 for his work on how to treat the most complicated, expensive patients in his city — people who often have high ACE scores, he found.
"I can't imagine, 10, 15 years from now, a health care system that doesn't routinely use the ACE scores," he says. "I just can't imagine that."
Brenner only learned about ACE scores a few years ago, and says he regrets not integrating the tool into his practice sooner. But like most doctors, he says, he was taught in medical school to not "pull the lid off something you don't have the training, time or ability to handle."
In theory, Brenner says, talking to patients about adverse childhood experiences shouldn't be any different than asking them about domestic violence or their drinking — awkward topics that doctors routinely broach now.
But spreading the word about ACE scores has been a challenge, he says.
Even doctors who want to screen their patients in this way say that figuring out exactly how to do so is complicated. Who would review the answers with patients? A doctor? A nurse? A social worker? And what should doctors do with a patient's ACE score, once they have it?
"You can't go back 40 years and make the bad childhood go away," says Dr. Richard Young, a family physician who also trains residents in family medicine in Fort Worth, Texas.
Young says he sees patients all the time with lots of health problems who had rough childhoods — and he's not afraid to talk to them about what they've been through. But he's skeptical of the usefulness of asking every single patient about adverse childhood experiences.
For those who already have reckoned with demons from their past, the questions could bring up issues they'd rather not relive, Young says. And many of the biggest factors that can foster disease and shorten life — depression, alcoholism, drug abuse, and complicated, chronic conditions like diabetes and obesity — are problems he says he would find out about anyway, without having to ask patients about their childhoods.
"There are no randomized controlled trials that show that applying these screening tools to a large population changes any outcomes that a patient cares about," says Young. "Someone's got to show me that it's going to actually make a difference in my patients' lives — and to my knowledge no one has done that."
Felitti agrees that there is no research tracking how asking for ACE scores affects patients in the long term, but says that from his experience with many thousands of patients, the benefits of getting an ACE score come down to something more spiritual than medical: alleviating shame.
Felitti says that many of his patients never had told anyone that they'd been abused as a kid — ever — until he asked them. Disclosing their secrets, they told him afterward, brought them tremendous relief.
He likens that unburdening to a lay version of a Catholic church confession.
"They leave with the understanding that they're still an acceptable human being, they're still part of the group," Felitti says.
Instead of treating a specific medical problem, talking about an ACE score with a patient is a process of listening and accepting, Felitti says. But for busy doctors eager to diagnose and cure, that's harder than it sounds.
This story is part of the NPR series, What Shapes Health? The series explores social and environmental factors that affect health throughout life. It is inspired, in part, by findings in a poll released Monday by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health.
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Transcript
ROBERT SIEGEL, HOST:
Imagine the next time you go to the doctor, you're told that there's a new and very simple way to predict your risk for depression, addiction, heart disease - all you have to do is answer 10 yes-or-no questions about your childhood. Yesterday on our program, we heard that in theory this could happen, thanks to something called an ACE score. Rob Anda is one of the two doctors who helped develop it.
ROB ANDA: When I saw the numbers, I thought that people would flock to this information. And the initial reaction was, really, silence.
SIEGEL: Fifteen years later, as Laura Starecheski reports in the next installment in our series What Shapes Health, that silence persists.
LAURA STARECHESKI, BYLINE: Dr. Vincent Felitti, the other doctor who helped develop the ACE score, believes it could still be a game changer in American medicine, the key to helping doctors take much better care of their patients. But...
VINCENT FELITTI: In terms of medical practice, it basically has been avoided. (Laughter). It has gone nowhere and the question, really, is why?
STARECHESKI: There are actually a lot of reasons why. It's not taught in medical school. There's no way to bill for it. There's no protocol for what to do with the results. But according to Felitti, those are all just excuses.
FELITTI: The real reason is one of personal discomfort on the part of physicians.
STARECHESKI: That's because ACE stands for Adverse Childhood Experience. Your ACE score is a tally from 0 to 10 of whatever bad things happened to you as a kid - sexual abuse, physical abuse, addiction or mental illness in a parent. Felitti spent a couple decades studying the ways these experiences can affect our health long after childhood. His research shows that the tougher you had it as a kid, the higher your ACE score and the higher your risks for disease, mental illness and early death. These are risks that are really useful for doctors to know about, but Felitti says that when he talks to physicians about getting ACE scores, they say things like...
FELITTI: My God, I can't do that. I can't ask questions like that - that's opening Pandora's box.
STARECHESKI: They worry that these questions will mean emotions, tears, relived trauma - things that are hard to deal with in a regular doctor's visit. I wanted to see if that was actually true.
So great you made it.
BONNIE RATLIFF: Hi.
STARECHESKI: Hi Bonnie.
So I asked Dr. Felitti if I could sit in while a patient met with him. A mother of two in her 30s named Bonnie Ratliff agreed to come in for an appointment. She seemed a little nervous. But Felitti, tall and thin, sat down across from her completely at ease.
FELITTI: This serious health or emotional problem that your mother had - can you tell me more about that?
RATLIFF: She ultimately had a nervous breakdown, never recovered from it. She started drinking and smoking, and that's when the house became what you would see on a "Hoarders" house, on like, a "Hoarders" TV episode.
FELITTI: And how did that affect you when you were a girl?
RATLIFF: (Laughter). It was hard, you know? It was especially hard because she made us keep it a secret.
FELITTI: I see on the questionnaire that you were molested as a kid.
RATLIFF: Yes, I was. But I don't feel like there's any particular lasting issues there. It was one time. It was by...
STARECHESKI: It took about a half-hour to go over everything - some issues with irregular heartbeat, weight gain, allergies, an eye problem - in addition to Bonnie's childhood. Longer than a typical doctor's appointment, sure, but otherwise not that different.
RATLIFF: You don't feel like you have to bear your emotions, you know? If it's like, just a checklist and you can just check off these things that have happened to you - yep, yep, yep - it doesn't feel so scary.
STARECHESKI: Felitti hadn't even mentioned the term ACE score or told her what hers was - 4 out of 10. But still, after the appointment, Bonnie said something had clicked into place for her.
RATLIFF: I've done a lot of thinking about how my childhood experiences have turned me into the person I am, how I still carry them with me. I haven't necessarily connected it, for the most part, to physical issues before this.
STARECHESKI: And that's the point. Felitti says that asking patients about ACEs helps the patient understand their health better and the doctor understand how to help them. And it could potentially help the whole health care system understand patients better. That's according to Jeff Brenner, a family doctor in Camden, N.J.
JEFF BRENNER: It's still really the best predictor we've found for health spending, health utilization, for smoking, alcoholism, substance abuse.
STARECHESKI: Brenner won a MacArthur Genius Award for his work on how to treat the most complicated, expensive patients in his city, often people with high ACE scores.
BRENNER: I can't imagine 10, 15 years from now a health care system that doesn't routinely use the ACE scores. I just can't imagine that.
STARECHESKI: Brenner only learned about ACE scores a few years ago. He says he regrets not integrating ACE scores into his practice sooner. But like most doctors, he says he was taught in medical school...
BRENNER: Don't pull a lid off something you don't have the training, time or ability to handle.
STARECHESKI: Now, Brenner's trying to spread the word.
BRENNER: I have been in many, many rooms across the country full of health care providers asking has anyone heard of the ACE study, and there'll be one or two people that raise their hand.
STARECHESKI: The few doctors I found who want to use ACE scores in their practice like Brenner say that figuring out how to do it is complicated. Will they stick to a checklist on paper, like Felitti? Who will review the answers with patients - a doctor, a nurse, a social worker? And the biggest stumbling block - what does a doctor do with an ACE score once they have it?
RICHARD YOUNG: You can't go back 40 years and make the bad childhood go away.
STARECHESKI: Richard Young is a family doctor in Fort Worth, Texas. He also trains residents in family medicine. He says he sees patients all the time who have lots of health problems and who had rough childhoods, and he's not afraid to talk to them about it. But Young's not convinced screening every patient for those things makes sense.
YOUNG: Someone's got to show me that it's going to actually make a difference in my patients' lives, and to my knowledge, no one has done that.
STARECHESKI: There is no research tracking how asking for ACE scores affects patients in the long term. The closest thing was an internal study at Kaiser Permanente in San Diego, where Dr. Felitti did his research. The study tracked more than 100,000 patients in the year after they were screened for ACEs. It found that people went to the doctor 35 percent less often in that year, a potential cost-savings in the billions. So why did people go to the doctor less? Maybe they were scared off by the questions themselves. Or, were they maybe somehow healthier? The study couldn't answer that question. But from his experience with many, many patients, Felitti chalks it up to something more spiritual than medical - alleviating shame.
FELITTI: A brief process, minutes long, in which one person tells another person who is important to them things about themselves that are shameful.
STARECHESKI: Things many of his patients had never told anyone, ever. Disclosing their secrets to him brought tremendous relief, Felitti says, not unlike confession in the Catholic Church.
FELITTI: They leave with the understanding that they're still an acceptable human being, they're still part of the group. And I think we kind of stumbled into a lay version of that process.
STARECHESKI: A process of listening and accepting, but not necessarily treating a specific problem, which, for time-crunched doctors eager to diagnose and cure, is a role our health care system just isn't built for. Laura Starecheski, NPR News.
SIEGEL: Our series What Shapes Health will continue next week. Laura will take us to a clinic in Philadelphia using ACE scores to try to prevent diseases in kids before they're even born. Transcript provided by NPR, Copyright NPR.
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