Last year, the California Department of Health Care Services rolled out its plans for universal screening for trauma among its pediatric and adult Medicaid population. Beginning January 1, 2020, California physicians were able to receive an incentive payment of $29 for each pediatric patient screened for ACEs using the PEARLs (Pediatrics Adverse Childhood and Resilience Study) tool. Dr. Dayna Long talked with ACEs Connection staff reporter Laurie Udesky about ACEs science, what led to the PEARLS tool, and how training in trauma-informed practices is an ongoing process.
Long, a pediatrician, is the director of the Center for Child and Community Health at UCSF Benioff Children’s Hospital Oakland, CA. In 2013 she developed the hospital’s Family Information and Navigation Desk (FINDconnect), staffed by navigators who link families with food, housing, childcare and mental health resources. She is co-principle investigator of the Pediatrics Adverse Childhood and Resilience Study (PEARLS), as part of the Bay Area Research Consortium, which includes UCSF Benioff Children’s Hospital, Oakland, the Center for Youth Wellness, and the UCSF School of Medicine and Pharmacy.
Laurie Udesky: When did you first learn about the ACE Study? What was your reaction?
Dr. Dayna Long: At UCSF Benioff Children’s Oakland, we have been doing work on the social determinants of health for a long time, dating back to 2012. We were screening for food insecurity and housing instability and mental health issues in caregivers and for community violence. We were using the nomenclature that these were determinants of health, upstream factors that we know are impacting outcomes. I think that the understanding and framework of ACEs was really helpful to those of us who have been in this field and going upstream to address these determinants of heath for a long time. But we already had knowledge and were already doing a randomized controlled trial on how to modify health outcomes and address unmet social needs, and the impact of that on health care utilization.
So, the nomenclature of ACEs was relatively new to us. But understanding that social determinants of health drives health outcomes has really been a part of our work for a long time.
LU: What was the impetus for wanting to screen your patients for ACEs?
DL: So, both at UCSF Children’s Hospital Oakland and at UCSF General [now known as Zuckerberg San Francisco General Hospital], our initial impetus for screening for unmet needs was that we knew that unmet needs were drivers for poor outcomes, particularly in low income communities and populations of color — populations we serve across the UCSF system. So, the real desire was just to improve health outcomes of our patients.
LU: Before you began doing that, you had worked on developing community resources that would address unmet needs of families; that was the FINDconnect program. How does that in-house program help after you screen patients?
DL: We created a screening tool called the PEARLS tool. It’s a universal screen for true primary prevention to identify kids who are most at risk for poor health outcomes, secondary to exposure to trauma. And I’m thinking of trauma broadly — as the initial ACEs [screener] about abuse, neglect and household dysfunction, then social determinants of health questions around food insecurity, housing instability, community violence and discrimination. Once you screen a child, FINDconnect is the intervention to address what is uncovered after universal screening. It’s supported by community navigators who further assess for unmet needs then connect families, and it’s usually a warm hand-off to geo-based community organizations. Usually there is follow up with families to make sure those resources were utilized, and to make sure that things were resolved, and to see if new needs have come up and to follow up.
Dr. Long and a team from UCSF Benioff have been part of a two-year learning collaborative known as the Resilient Beginnings Collaborative, with six other safety net clinics in the San Francisco Bay Area. (Here is a link to one story, a link to a second story, and a third story an ACEs Connection about other RBC participants.)
LU: When I’ve talked to other groups in the Resilient Beginnings Collaborative, they talked about how some of your findings from querying focus groups in your development of the PEARLs tool were helpful to them in making decisions about whether to use an identified or deidentified screening tool. (For example, an identified ACE screening tool asks participants to place a check mark by each statement that applies to their experiences. A de-identified screening tool asks participants to add up the number that applies to them.)
Could you talk about some of the other findings from the focus groups?
DL: In order to create PEARLs, we started doing focus groups in 2016. Let me rephrase that they were cognitive interviews with key stakeholders as opposed to focus groups. We interviewed patients and families and staff – whether it was frontline staff, resident physicians and attending physicians, as well as social workers and behavioral health therapists. Initially we did this rapid cycle iterative process, whereby we took each question and asked our families what they thought about the wording, and what the question meant.
We reviewed the available literature that linked the question to studies that looked at biomarkers. We asked our families/patients, does this question ask what we think it asks? Does the question get at what we want to study? Does it measure what it is supposed to measure? You can think of it as being similar to “face value,” where you just skim the surface in order to form an opinion.
And it was a result of cognitive interviews with multiple stakeholders that led us to create the PEARLS tool, which was then used as part of a randomized controlled trial.
We found some seemingly contradictory information from those [cognitive interviews]. It seemed as though families thought that the screen was completely acceptable. And that although disclosure rates were higher on the deidentified, they said that they preferred the identified format.
LU: That’s interesting, did you explore that contrast further?
DL: Yes. And we are now publishing a manuscript on it. So, the exact data is embargoed, but I’ll be happy to share it with you once it gets published.
LU: Instead of talking about the data, is there anything that you can say contextually to give a sense of that contrast now?
DL: It was reconciling some differences during the cognitive interviews between the qualitative interviews and the quantitative data — the stated preference for taking it in an identified format, but yet disclosing more when it’s deidentified. And ultimately what it means is that clinics have the right to choose what they think is best for their patient population.
LU: Could you talk about the outcome measures you were investigating for the PEARLS randomized controlled trial study?
DL: So, on a high level, we were looking at health outcomes, electronic medical record data, and self-reported diagnostic and symptomatology data. We were also looking at biomarkers and pilot experience of different interventions to mitigate toxic stress.
So, one of those interventions is care coordination using the FINDconnect platform, and the other intervention is something called resiliency groups. It’s groups with a model of dyads of children and adults that’s focused on mindfulness — on self-regulation and co-regulation.
LU: Could you tell me more about what came out of the resiliency and coregulation groups?
DL: Experientially, the 100 families who attended thought that it was an incredibly powerful experience. The ability to process these concrete skills around mindfulness and regulation between caregiver adults and children was really helpful.
LU: What was the reason your group wanted to join the Resilient Beginnings Collaborative (RBC)?
DL: I think the RBC was a brilliant move by Genentech to fund infrastructure and capacity building of clinics in the region, and to really focus on trauma-informed care. If we are wanting to promote universal [ACEs] screening within pediatric medical homes, we need to have trauma-informed systems in place in order to support the patients and the staff who are doing the universal screening.
The RBC was helpful because it looked from a systems perspective at how to build capacity to actually be a healing organization. And the fact that they helped support trainings was something that was necessary.
LU: Were there particular lessons learned or things that came out of the RBC experience that were helpful for your team?
DL: So, being able to share lessons learned, and the other teams being able to reflect on those lessons was important. Understand that at UCSF Benioff Children’s Hospital Oakland, we do work in the safety net. We are a Federally Qualified Hospital Clinic and we have lot of really innovative work happening here. And it was important to me to share that innovative work with other clinics and see how that innovation is taken up and scaled within other clinics. It was also really important to hear the challenges that other clinics were having. A lot of clinics don’t have social workers or behavioral health workers or therapists, or have trouble getting buy-in from senior leadership. It’s great to celebrate our successes, but it’s important to hear what the barriers are and how clinics have worked through them was also really helpful.
LU: One of the prerequisites for RBC was to get trained in trauma-informed care (TIC). Had your staff been trained in TIC?
DL: We had some training before — some of the trainers in trauma-informed care are actually staff members at UCSF Benioff Children’s Hospital Oakland. We used internal trainers to train more staff here. So, we definitely had an awareness of TIC. But it helps to multiply the trauma-informed training that’s already taken place.
Before we talked about trauma-informed care, we had a focus here in Oakland on cultural humility. The entire cultural humility curriculum was created by a pediatrician at UCSF Benioff Children’s Hospital Oakland — Melanie Tervalon [and Dr. Jann Murray-Garcia]. And she’s created quite a revolution around cultural humility, which is a tenet of trauma-informed care.
And that was going back to the 1990s, to the Rodney King riots, and the hospital wanted to have a response to the violence that was being perpetrated against our communities. And so, we have a long history of doing this work on trauma and cultural humility. And it’s really just continuing to educate and update and inform.
LU: So, you had these earlier layers. Did you do specific training in conjunction with RBC? And if so, what did that entail?
DL: TI training with cultural humility is a lifelong process of self-reflection. And as an institution, we’ve gone through a lot of changes. So first of all, we’re one of the largest residency programs in the country. We have about 75 to 80 residents who turn over every year, so we’re constantly having to make sure that we’re updating and training new classes of residents.
But, also our leadership has changed over the last couple of years. So, Dr. Ken Epstein, who’s one of the trauma-informed trainers [through Trauma Transformed], who was formerly with the SF Department of Public Health did a training just for senior leadership. That was really helpful, just so that senior leadership knew what we wanted to do in our primary care clinic and broader throughout the hospital.
We also are constantly having ongoing training with our providers. So, we did multiple trainings for our primary care staff and really tied trauma-informed systems work to universal screening work for PEARLS.
LU: What did the training consist of?
DL: You can look at the Trauma Transformed website. They have trauma-informed training that they modified for RBC with Ken Epstein as one of their trainers.
And we also have an annual retreat for our primary care staff. And this year it was all focused on mindfulness, and about reflective leadership and about working together. And we use these principles that we’ve learned through Trauma Transformed and really make sure that we are promoting selfcare within our staff.
LU: That’s a great example, and typical of everyone I talk to who is on this journey — that trauma-informed training is an ongoing process. In terms of self-care, are there any specific selfcare practices that people are using on the ground that they may have not been using prior to this training?
DL: So, we made substantial changes within our clinic. One is increasing the level of awareness and education about ACEs and toxic stress, and how stress impacts health outcomes — whether it’s for our patients or for our staff. We’ve completed a lot more team experiences for our staff; that involves weekly huddles. It’s the providers, the licensed vocational nurses, the medical assistants, registration — all huddling together.
LU: So, have you had any anecdotal feedback on the huddles, or what came out of that that was helpful, or this new approach of recognizing staff members who are doing something that emphasizes caring, empathy and compassion?
DL: One of the great things about the huddles is that we are able to identify things that are happening that are great so that team members can say: ‘Oh the flow of my clinic was really great. I really appreciate how all my patients were roomed on time.’ Or we may be able to highlight something that’s not working and look at why it’s happening and come up with possible solutions. And every week we could see if a problem was fixed. It could be: ‘These are all the problems that we identified that we now have solutions for. These are the ones we’re currently working on and these are some new ideas.’ And so, it's a way that everyone’s opinion is valued, and everyone has input in the way that clinic is flowing.
LU: You talked about how Ken Epstein did training for your senior leadership. Of course, one of the key aspects of sustainability is getting leadership buy-in around ACEs science and trauma-informed practices. And what does getting the buy-in from senior leadership look like in a large institution?
DL: I actually am impressed that UCSF has taken up health equity as one of three pillars through which they’re hoping to advance innovation science research to scale. We have been able to create what we’re calling the Center for Research and Community Health that focuses on education and training and systems thought leadership around addressing determinants of health, trauma and resiliency. And the center has the buy-in not only from the president of our hospital, but it has gained a lot of traction within the School of Medicine and the Department of Pediatrics. We are absolutely determined to make sure that the Bay Area has the healthiest kids and that we are advancing health equity so that we can eliminate disparities that lead to differences in health.
To me, that’s what having a trauma-informed system looks like. It’s being able to demonstrate that academic value and the work on equity to improve health for all children.
LU: At another panel I heard you speak on at the National Grantmakers Association, you mentioned utilizing patient input in developing the language in the PEARLS screener. Could you talk about that?
DL: When we were doing the piloting in developing the PEARLs tool, we were really intentional about being true to the original ACEs, and pulling questions from the World Health Organization, from different county health departments, from the Center for Youth Wellness, from the Centers for Disease Control, and then putting together questions and showing them to our families in order to look at the tone and to look at the cultural appropriateness. So, examples are – we took out the pronouns. There are no his or her. It’s you or yours, or your child.
We realized that we had to be a little more specific when we are talking about mental health. Particularly in populations of color, mental health can be really stigmatizing. And so, we were more descriptive when asking about the mental health of the caregiver. We gave specific [mental health] examples: depression, or anxiety or feeling sad and down.
We made sure that we were very concrete in what we were describing. So, if you look at the PEARLS tool, we felt it was important to name some of the experiences that children have. So, if you look at the sexual abuse question. It’s not just: Did somebody touch your privates? It’s Did somebody do x, y, and z to your x, y, and z? (The questions from a version of PEARLs for a parent/caregiver of a teen is: Has your child ever experienced sexual abuse? For example, anyone touched your child or asked your child to touch that person in a way that was unwanted, or made your child feel uncomfortable, or anyone ever attempted or actually had oral, anal, or vaginal sex with your child.)
We thought about divorce, which is an ACE, but the true issue is: Did a romantic partner move in or out of the household?
LU: Could you talk about how changing the language in this example is in line with being more culturally appropriate?
DL: A lot of families look different. And we want to be inclusive of all families. So, it might be that a child was living with two caregivers in the home, an arrangement in that family, but they weren’t necessarily legally married. But it was still just as significant when one of those caregivers was out of the house. And the other piece of this is we wanted to make sure that the experiences of our families were represented in the PEARLs tool, which is why we added on the food insecurity questions, the housing questions. It’s why we added questions about discrimination, because the evidence is showing that experiences of discrimination can cause the same type of biologic dysregulation of other ACEs. So, we wanted to make sure that those experiences were being represented.
In the teen version, we wanted to make sure that we asked if teens themselves have ever been detained, arrested, or incarcerated. Or if teens themselves have ever been in a physically abusive relationship with a romantic partner.
We also really wanted to explore this issue of being separated from caregivers. (The original ACE questionnaire asks if a parent/caregiver has been incarcerated. The PEARLS screening tool also asks: Has your child ever been separated from their parent or caregiver due to foster care, or immigration? Has your child ever lived with a parent or caregiver who died?)
LU: Can you talk about how patient input may have been factored in to how you determined your work flow?
DL: I want to be clear that we had patient input in the development of the tool itself. The tool itself was used in a randomized controlled trial. And now it’s being used in a standard clinic concept. The patient input was in the development of the tool.
The stage we’re at right now is that the PEARLs tool is planned to scale to approximately 8,800 clinics and almost 100,000 providers across the state. I feel like this is a fantastic opportunity for clinics to be able to develop more work flows for screening for trauma. There are work flow templates available on the ACEs Aware website.
LU: Of course, you know there are different settings with different needs. Are there ways that you’re thinking about how those will be addressed? If you have providers that have completely different kinds of clinical settings, are there ways of troubleshooting around making PEARLs work in different settings?
DL: Absolutely, the workflows are general and adaptable to any clinic setting. It’s also really important to recognize that trauma screening is an element of what we do every day as primary care physicians. Our job is to advocate for children and promote wellness. And we have experience doing universal screening, such as for child development. And the PEARLS screen is an add-on to what practices are already doing in terms of making sure that kids can thrive.
LU: Going back to the study about PEARLs in the pilot study, I wanted to ask you If those kids/families who are referred to interventions, what percentage of them use them?
DL: We’re still in the midst of analyzing the data for that study. We’re hoping to get that information published so we can share it publicly.
LU: You might have a similar response to this question: Are there any takeaways from the interventions that families have been using?
DL: Absolutely. Our goal as pediatricians is to promote resilience among our patients, our staff and our community, to identify kids who are at the highest risk for poor health outcomes, and to provide interventions to mitigate those consequences so that we can create buffers around children. That is the goal. I truly believe that to promote universal screening that clinics need to focus not just on the role of the provider, but the role of the entire team. And that includes community health workers, care coordinators, navigators who have lived experience, who speak the same languages as their communities, who can really galvanize those communities, can do the referral and the case management.
Clinics are going to have to respond to positive ACE scores, and the response, much of it can be given by the provider when we talk about anticipatory guidance, stresses to our heart, body and mind. And they also should respond to other things. Is a family food insecure? They should get referred to a food bank to provide food to help resolve hunger.
Some of this is figuring out how we can actually link services within our community using navigation and care coordination.
LU: What are your biggest takeaways from the RBC?
DL: What I found so valuable was the shared experience and the shared challenges. Some of us are FQHCs, some of us are safety nets. Some private practice, some part of the county system. We’re all dedicated and motivated to screen for ACEs and using PEARLS. Our journey to get to universal screening looks a little bit different depending upon multiple different factors, such as buy-in from senior leadership or other staff members, or just having the ability or the power to move things through. And, I’m really hoping that RBC continues into another phase with the current clinics as well as onboarding more sites, so we can create these learning clusters, these learning collectives.
LU: As a result of AB340 — Early and Periodic Screening, Diagnosis, and Treatment Program: trauma screening legislation that was passed in 2017 — the AB340 workgroup was tasked with identifying options for screening tools. It came up with three options. Yet, DHCS decided to go with only one. So, what was the benefit of doing that? Are you thinking that sometime in the future there would be the possibility that providers could use other screening tools besides PEARLS?
DL: When you talk about the three options can you say what you’re referring to?
LU: Well the AB340 group came up with recommending PEARLS, the Whole Child Assessment tool that’s been used at Loma Linda University and other clinics in the state, and recommending that there be a third option for a screening tool that is open, but would meet the minimum requirements of what you all decided was necessary to be in a screening tool for pediatrics. So, I’m referring to the AB 340 group recommendations.
DL: I know those recommendations well; I was on the workgroup and I co-crafted them. I am thrilled that we have identified the PEARLs tool for reimbursement. And I think it’s helpful. If pediatricians were left to their own devices to use any tool, it would be hard to create standardization. It would be hard to create scores. It would be hard to know what’s a positive [score], what’s a negative [score], how many questions to ask. What’s the evidence base for those questions? I think over the next few years, we’re just going to learn a lot. And then we’ll have to see. And hopefully other states will follow California’s lead.
For more information about California’s trauma screening program, including what training will be available, see the Surgeon General’s website: ACEs Aware.