6

Transforming Children’s Health Care to Improve Lifelong Behavioral Health

In April 2020, the forum hosted the fifth webinar in this series, which featured Laurel Leslie, vice president for research at the American Board of Pediatrics, and Tom Boat, director of CFWELL at Cincinnati Children’s Hospital Medical Center. Together with Neal Halfon, founding director of the Center for Healthier Children, Families, and Communities at the University of California, Los Angeles, they held a discussion on a primary care approach to preventing mental health disorders, and the reasons it is necessary for the field to transform. This chapter discusses the severity and widespread nature of the problem, potential pediatric care settings for incorporating mental health, and the importance of family-focused approaches when working to transform pediatric care.

In her opening remarks, Leslie reiterated the massive shift in epidemiology across the world in terms of increasing “deaths of despair” (also highlighted in Chapter 5) and increasing prevalence of symptoms of disorders in children. Summarizing previous webinars, she pointed out the neuroscience data that supports a life course, multigenerational approach, consideration of the effects of adverse childhood experiences (ACEs), and the importance of going beyond the medical model to focus on the promotion of emotional well-being. Leslie explained who is showing up in health care settings seeking care, saying that 10–14 percent of children under the age of 5 have socio-emotional problems, while 45 percent of children experience at least one ACE by age 18. Again emphasizing the linkage of mental health disorders to childhood, she stated that 50 percent of U.S. adults with mental health disorders had symptoms by 14–18 years of age. There are also disparities in care, depending on the availability and access a family

may have to health care coverage where they live. One study, for example, found that half of the 7.7 million children in the United States with a treatable mental health disorder did not receive needed treatment from a mental health professional, a statistic that ranged as high as 70 percent in some states (Whitney and Peterson, 2019). Given the average delay of 8–10 years from onset of symptoms to intervention, silos in care, and increased costs, less than 50 percent of mental health referrals are used to seek care, and even those people that do seek care often stop prematurely due to financial hardship, stigma, or difficulty in getting access to care. The current mental health system is not enough, she said.

TRANSFORMING CHILDREN’S HEALTH CARE

Leslie presented arguments both for and against utilizing pediatric care settings for improving the mental health system’s care delivery. With the passing of the Affordable Care Act (ACA), plans are required to cover preventive care services at no out-of-pocket cost to families. These preventive services include 30 well-child visits recommended between 0 and 21 years. Additionally, this is where most childhood diseases and conditions are managed, and because of the numerous recommended preventive visits, there is typically more of a relationship formed with the provider. Primary care settings can thus serve as a link to other child-focused health, developmental, and social services. Additional challenges nonetheless face those who use these settings for addressing children’s mental health needs, but while these challenges are significant, they can be addressed if we consider transforming care. The current medical model, for example, focuses more on the identification and diagnosis of disease, compared to promotion and prevention. Training around mental health conditions in children is underfunded and inadequate in many pediatric settings. There is also an inadequate supply and distribution of nonphysician providers in primary care settings, many of whom are better trained to address mental health needs of children and youth. Perhaps most importantly, the health care system overall does not support promotion, identification, and treatment of mental health issues in children in terms of time, reimbursement, and personnel within pediatric primary care settings. All of these reasons present the need to incorporate a perspective of promotion, life course, and systems integration to develop sustainable solutions and transform care.

Changing Pediatric Primary Care

Revisiting the discussion of transforming health care models from Chapter 3 (see Figure 6-1), Leslie reminded participants of the 3.0 Transformation Framework and how a 3.0 model of care is based on thinking

about health as the “extent to which children are enabled to develop and realize their potential, satisfy their needs, and develop the capacities that allow them to interact successfully with their biological, physical, and social environments” (NRC and IOM, 2004). One major goal would be to provide integrated care.

Leslie explained that some settings integrate standardized emotional and behavioral screening programs and link to programs like home visitation or school-based services, but not even all of that will propel the pediatric health care system from the 2.0 model to an upgraded 3.0 configuration. A full transformation will require us to move boldly toward integration and draw on what we know about implementation science to figure out the best way to incorporate integrated care into practice and disseminate integrated models of care on a wide scale. She continued with examples of what integrated training and care would require (see Box 6-1). From a scientific standpoint, we have over 800 evidence-based programs that address children’s mental health, Leslie noted, but most owe their existence to research studies and are limited to certain age groups or diagnoses or include homogeneous populations. For a state, county, or health system to

try to implement these protocols, we would need to address implementation barriers they would face. Some researchers have been suggesting and studying modular-based treatments that are averse to using diagnosis in addressing these barriers.

If these actions for training and care delivery were put into place, she said, we would expect to see improved health outcomes like reduced wait times and errors, improved access to the services needed, less duplication, decreased use of emergency services, and greater accountability and awareness of responsible parties (National Alliance on Mental Illness, 2011). For families, this would manifest as regular contact with a provider, reduced stigma for certain services, improved adherence to treatments, and better convenience and satisfaction with their care.

Family-Focused Programs

There is also a growing evidence base for multilevel, family-focused programs that support parents and caregivers in promoting the well-being of children, as well as identify and manage risk factors. Leslie gave a few examples of these evidence-based programs and cited both the Annie E. Casey Foundation Blueprint program, which performed a systematic review of interventions that meet rigorous standards, and the Washington State Institute for Public Policy (also discussed in Chapter 5) that allows policy makers to review cost analyses of programs. These programs build on the promotion, life course, and systems integration perspectives to enlist the family and the broader neighborhood as partners in fostering the child’s well-being. Programs may be universal (expectant parents or parents of adolescents), selective (families identified with special needs or vulnerabilities), or indicated (those already showing symptoms such as autism or anxiety). Several examples of programs exist, but they nearly always share the following common components:

• Community-based
• Culturally sensitive
• Accessible
• Developmentally appropriate
• Foster supportive relationships
• Provide peers or navigators
• Offer education and information
• Offer practice and homework
• Measure outcomes

Some states have begun funding programs like the Triple P Positive Parenting Program in Washington that has been funded through Medicaid.

Similarly, the Healthy Steps program has been made available in 130 pediatric offices across the country.

Incorporating Subspecialty Care

There is a growing recognition of the need for behavioral health in subspecialty pediatric care, Boat stated, but health care still largely targets physical health and functioning. If there are mental health programs, they are most often layered on top of other services instead of being integrated. Chronic disease is an increasingly prevalent challenge for families and our society. Around 10 percent of all children are born premature, which often leads to lifelong health issues. An estimated 5 percent of children have some type of disabling or life-threatening chronic health condition. For many, subspecialty care functions as primary care because their chronic conditions necessitate seeing their provider quite often. As the number of children with chronic care needs increases, he said, the prevalence of behavioral disorders in parents and siblings of such children is also increasing. The economic and social stresses of managing these conditions can result in the disruption of family structure and function. These difficult roles for all involved can result in lifetime risks for health and longevity (Cohn et al., 2020). Numerous studies have found that parents of chronically ill children have greater anxiety and depression scores than parents of healthy children. Costs are another factor, with data showing that children with chronic medical conditions who also had concurrent mental health or substance use disorders had nearly 2.5 times the annual medical care costs compared to those with only chronic medical conditions. Families experience increased out-of-pocket expenses and other costs, creating an economic burden (NRC and IOM, 2004). Recognizing these stresses, pediatric chronic care models have responded by incorporating social workers and behavioral professionals into care teams, as well as increasing mental health screening, diagnosis, and treatment for children, adolescents, and parents in the families since they are likely at higher risk.

Unmet Needs of the Current Model

Despite these improvements, the response to stresses from those implementing pediatric chronic care models has been partial at best, Boat stated, and there are many needs that still demand attention. He listed three overarching unmet needs that the current medical model has yet to address: the full integration of behavioral health into the care model, the promotion of child and family behavioral health, and the identification and mitigation of risks for behavioral health. “As the family goes, so goes the child,” he said. He explained that for those families in situations where structure and

function are disrupted—often due to the stresses and management demands of the child’s chronic disease—children do not do well. He asked how we can help families achieve a higher level of resilience and family wellness.

Importance of a Family-Focused Approach

Boat introduced CFWell, a program at Cincinnati Children’s Hospital that uses a family-focused approach to promoting behavioral health and wellness when a child has a disabling or lifelong chronic illness. Key elements of the program include:

• Attention to lifestyle factors that promote health and wellness
• Managing stress
• Encouraging moments of joy and satisfaction
• Addressing adverse social and economic determinants
• Surveillance for family behavioral disorders

Paying particular attention to lifestyle factors, he discussed the importance of sleep, nutrition, exercise, and finding joy. All of these may seem like simple parts of daily life, but he elaborated on data showing how these families often struggle to meet these everyday targets. For example, he said that one-third of families of children with cystic fibrosis (CF) experience disordered sleep, and, furthermore, there is a strong correlation between the sleep patterns of the child with CF and that of the parents. Additionally, 40 percent of parents report daytime sleepiness (Byars et al., 2020), potentially impairing ability to perform necessary tasks at work and in the home. Optimal nutrition and exercise are also difficult for these families, given the time demands of chronic illness appointments and daily care routines. Many families end up eating processed food on the go and do not have time to exercise, even spending more time sitting in the car or sitting in waiting rooms and at clinics. This frequently results in excess body fat, limited skeletal muscle development, and related consequences for health, Boat explained.

There are multiple interactions among sleep, exercise, and nutrition, he continued. We know exercise can be an antidote to sleep problems in some people. Knowing what families currently experience, he said, we are trying to better help families incorporate these vitally important elements into their busy schedules by stressing the importance of lifestyle factors at the time of diagnosis, a message that is reinforced at each visit. Additionally, sleep, nutrition, and exercise consultants are made available to families when needed or desired.

Stress is another commonly experienced factor that plays a major role in a family’s ability to manage these conditions. Some worries are general

ones, such as those that concern the child’s health or money to pay for care, while others are more situational like those experienced during periods of testing or hospitalization. Even school engagement can be an extremely stressful experience for families of children with chronic illness. Looking at school engagement for students with CF, the average number of school missed each year was more than 25. More than 75 percent of parents felt stress over how to advocate for necessary accommodations for their child, and many schools and teachers are simply at a loss over the best ways to support a CF student’s social and academic needs. School success is a critical precursor to successful independent adult life, Boat emphasized, so it’s clear that thinking about holistic needs must go well beyond the hospital and physical health.

Possible Recommendations for Subspecialty Programs

Boat shared his recommendations for improving and protecting the mental, emotional, and behavioral health of children and families in these situations:

• Address demands, stresses, and their behavioral consequences from the time of diagnosis.
• Incorporate attention to lifestyle factors and stress reduction into the care model.
• Recognize that family adherence to recommended therapies depends on family wellness and resilience.
• Partner with other providers to promote family wellness (primary care, child care, preschools, schools, social services).

Following discussions with parents, providers, and multiple other stakeholders, Boat highlighted a recent program and publication, A Roadmap to Emotional Health for Children and Families With Chronic Pediatric Conditions, which is sponsored by the American Board of Pediatrics (Pickles et al., 2020). In addition to being informed through discussions, this program has also conducted literature reviews to collect all available evidence and has found several key themes. He explained that all health professionals should support the promotion of emotional health, beginning from the time of diagnosis of a disease, even if that person is not a trained mental health professional. Additionally, providers must realize that families may be reluctant to share vulnerabilities and may even underreport the extent of their stress in order to look strong for their children. The road map makes available several types of resources, including scripts for conversation openers, videos, tools, and ideas for changes to improve mental health (there are also currently other resources in development as well as chronic care pilot

programs in different settings). Boat shared that this and other programs have made considerable progress but feels that much work remains to be done as far as adequately understanding and meeting family needs when faced with serious chronic disease. He stressed the urgent need to learn and test interventions designed to better support emotional health and resilience for families of children with chronic illness.

CHALLENGING THE FIELD TO EMBRACE TRANSFORMATIONAL CHANGE

Moving to health care model 3.0 will require us to completely disrupt the current system, Leslie said. The opportunities to work more closely with other sectors—public service, families, businesses—are good, especially in our current environment. The COVID-19 pandemic has already created a massive disruption in nearly all health and mental health care operations and has particularly created room for changes in how we provide care and how we think about children’s emotional health and resilience. She cited increased use of telemedicine (via phone or video) as one such example and the public discussion about the impact of isolation on children’s development as a second. While the negative impacts of the pandemic are of course numerous, Leslie said, “I’m already seeing a change in the dialogue about how we can better focus on children’s mental, emotional, and behavioral health and resiliency.” This is not a time to be silent on children’s needs, she continued, saying that this pandemic has presented an opportunity to recognize the importance of parents, teachers, and caregivers in children’s lives; understand how social distancing can affect mental health; and illuminate the failures of and disparities inherent in health care financing and delivery on a central stage.

Halfon continued the discussion by asking their thoughts on who is involved in this, and when and where these kinds of transformative interventions could take place (at home or in schools). Leslie replied that the best approach would involve using established best practices, accounting for the local context and characteristics of a community to drive change. The settings may be different, she said, but you can look at models of what has already been done in similar scenarios. New York, for example, is hiring peer navigators as part of its mental health programs, while other states are employing community health workers. Success will come from taking creative measures to understand the needs of children and families and the types of programs available to meet those needs. Financing will be important too. Boat brought a different perspective regarding who is involved, saying that pediatricians must be better trained and supported in their practices regarding behavioral and mental health. If they do not feel qualified to be directly involved, then they can make referrals within the

pediatric practice. At the very least, trainees should experience situations where they have to learn about the intersections of physical and emotional health. Without buy-in from physicians, he said, success will be difficult to achieve.

Halfon commented that current epidemics affecting children and youth, including obesity, neurodevelopmental disorders like ADHD and ASD, mental health conditions, and various forms of addiction to drugs, alcohol, vaping, and gaming, all have a life course component. In other words, they all have definable developmental origins, often connected to adversity, adaptive and maladaptive coping mechanisms, and an early start in life. From an life course health development standpoint, they represent a failure of the developmental ecosystem in which children are being force to grow up and live. While some of the needed changes will come from innovations and improvements in health, mental health, and social service systems, other changes are needed to address root causes (inequality, structural racism, persistent cross-generational disadvantage and adversity) that are deeply embedded in the U.S. ecosystem of child development. The COVID-19 pandemic has laid bare just how many cracks are in both the service systems and the deeper ecosystem, Halfon noted. Once we enter the recovery phase, there will be an opportunity to really talk about the kind of infrastructure needed to rebuild in a smarter way. It will not only require more research and interventions, he said, but also a different way of innovating and improving the utilization of learning networks to leverage large communities of people to share lessons and move beyond the incremental changes we’ve been making in order to transform the system with bold strokes. One example of a learning network is the ImproveCareNow network that has been moved forward by Peter Margolis and his colleagues at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital, Halfon offered. ImproveCareNow has demonstrated how a learning health system can be created using learning networks to create a large community of people committed to testing, improving, and learning together in order to make bold transformative improvements in outcomes.¹ These are huge problems with deep interconnected roots, and we need to do a better job of learning faster and developing solutions that are more transformative.

Potential Future Research to Promote Mental, Emotional, and Behavioral Health for Children

Throughout the six-part webinar series, numerous speakers and discussants presented their work across a diverse array of fields relating to mental, emotional, and behavioral health. Many highlighted the changing

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¹ For more information on ImproveCareNow, see https://www.improvecarenow.org.

epidemiology in this area over the last few decades and the wealth of data that had been collected to paint the picture demonstrating the needs and context nationally. In addition to suggesting new methods of care delivery and policy approaches for improving outcomes for children, though, several speakers highlighted areas where future research is needed to truly address the problems at hand and better understand the nuances of these multifaceted and complex issues. This chapter highlights those suggestions.

Kimberly Hoagwood, Cathy and Stephen Graham Professor of Child and Adolescent Psychiatry at New York University’s School of Medicine, emphasized that, in terms of children’s mental health research, there has been a 42 percent decrease in funding from the National Institute of Mental Health (NIMH) since 2005. Overall investment in children’s services research is only around 2 percent of the NIMH budget, she said. This is also mirrored by state budgets, which similarly underfund research for children’s services.

More specifically, a few speakers touched on the need for research and improved understanding that could promote children’s mental and emotional health and better outcomes overall. Stephen Buka, professor of epidemiology at the Brown School of Public Health, pointed out the lack of long-term, longitudinal cohort data for children with mental disorders and disabilities, saying that new studies of this sort could allow for tracking development with interventions similar to the approach used by the GenV study in Melbourne described in Chapter 2. He also highlighted that there is no dedicated surveillance system for mental health in children. This results in patchwork, ad hoc systems that make it difficult to ascertain the true burden of these diseases and the nature of the changing epidemiology. During his presentation, Buka noted that internalizing and externalizing symptoms may be changing in recent cohorts of young people, but it is difficult to tell. Available evidence suggests that the burden of internalizing symptoms is most clearly increasing in adolescent girls in particular, but it is unclear as to whether the same thing is happening in boys as well. It is essential, Buka said, for further research to regularly monitor trajectories of mental health symptoms to help us understand how different factors may influence these conditions.

During the presentation of Pilyoung Kim, director of the Family and Child Neuroscience Lab at the University of Denver, some participants asked about findings in the literature based on varying demographics and the different socioeconomic settings in which children live. Kim pointed out the lack of knowledge in the neuroimaging space and the need for greater diversity in those studies to understand cultural differences in interventions. There is also likely a lot that could be learned about geographical differences such as rural versus urban environments and how those children respond to both identified risk and protective factors.

Policy is an area that has often been neglected in this space to the detriment of us all, Hoagwood stated, but it is not feasible for the government and for hospitals to take on the entire burden, making research a necessary element to bridge the gap. She highlighted the lack of comparative policy impact studies in the United States, especially in comparison to other countries, which in the future could help us decide which policy options would have a better impact and outcome on the intended audience.

There were multiple examples of best practices and novel applications presented throughout the entire series. Taking those examples, applying them to local context, and continuing to push forward to learn more about some of the areas highlighted in this chapter can help the field continue to advance in achieving the goals of improving mental, emotional, and behavioral health for children and families.