Building a National Roadmap Sala leads efforts to enhance support for children with chronic illnesses.

A child’s experience with diabetes, cystic fibrosis, or other chronic condition often affects the entire family. Each person can develop stress, depression, or anxiety, and have difficulty coping with the disease’s challenges.

And yet, to many parents, pediatricians haven’t adequately addressed these widespread mental health needs. Parent advocates from across the United States asked the American Board of Pediatrics (ABP) to prioritize the emotional and behavioral health of chronically ill children and their families.

The ABP agreed. It launched the Roadmap Project to develop behavioral health assessment resources and techniques for all American pediatricians who care for kids with chronic illness.

Collaborate to Innovate

In 2019, the ABP created a collaborative of nine top children’s hospitals to work on the Roadmap Project, including Hassenfeld Children’s Hospital with leadership from Sala Institute for Child and Family Centered Care, which is renowned for helping chronically ill children and their families cope with their emotions and build resilience.

“The Roadmap Project is opening up a national conversation about how we can systematically address these gaps in care delivery,” explains Becky Lois, PhD, co-director of KiDS of NYU Integrated Behavioral Health program, part of Sala Institute. “There were already a lot of resources about checking in on the emotional health and well-being of specific patient populations, such as those with cystic fibrosis. The Roadmap initiative expands that work and says, ‘All of us in pediatrics need to take this on and address emotional health for every patient at every visit.’”

Dr. Mary Pat Gallagher

To help create the Roadmap, each of the nine hospital teams—made up of practitioners and family partners—tested the Roadmap’s proposed behavioral health approaches within a specific area of their institution. The Robert I. Grossman, MD, and Elisabeth J. Cohen, MD, Pediatric Diabetes Center, led by Mary Pat Gallagher, MD, was selected as Hassenfeld’s pilot site.

“The Roadmap Project really dovetails with what we already do at the center with support from Sala, which is incorporating emotional and behavioral health in our daily work with children and families, in ways that families help design,’’ Dr. Gallagher explains. “The idea was that each hospital could learn from what the others did. Our goal was to test the effectiveness of techniques that could apply broadly across chronic illnesses—like depression screening or proactive education about the importance of emotional health—and then train all staff, from dietitians to nurses, in these techniques.”

Small Changes Lead to Big Improvements

For its part in the Roadmap Project, the Pediatric Diabetes Center created a new screening process for depression and anxiety. To build it out effectively, Dr. Gallagher says her team focused on “small tests of change” for the screening, meaning they would plan, implement, study, and then re-implement pieces of the process in real time. This allowed for continual improvement—a hallmark of the Roadmap Project.

The first step in the new screening process asks a patient or family member four short questions. A high score suggests the likelihood of emotional distress and prompts a larger screening. The Pediatric Diabetes Center began its test by screening one family and asking for their feedback.

As the screening process evolved, Dr. Gallagher decided that even if someone scored zero (indicating no anxiety or depression), she would still talk to them about emotional and behavioral health, thank them for anything they shared, and provide a handout with more resources.

“We’re still iterating,” Dr. Gallagher notes of the center’s new, customizable screening process for anxiety and depression, “but the system is already well enough developed that we are able to offer it to all of our patients in the center. It’s already making a difference.”

The Roadmap Launches Nationally

Efforts like these across all nine participating children’s hospitals to test small changes in assessing children’s behavioral health yielded valuable results. The ABP and hospital collaborators used their findings to produce a suite of practical online educational resources that are now being adopted nationwide by pediatricians and other practitioners who work with chronically ill children and their families. The Roadmap website also offers resources to support families who identify as Black.

“Roadmap Project participation by parents identifying as minorities helped inform our understanding of their unique experiences,” Dr. Lois notes. “They reinforced that when we think about how patients and their families come to us, and what their experiences have been with medical teams and hospital settings, we have a lot to do to create safe spaces for patients and families, in a culturally sensitive way.”

Dr. Lois believes the Roadmap’s magic lies in its customizable approach to behavioral and emotional health assessments. She says, “We now have some of the tools we need as health care professionals to normalize mental health check-ins with our patients and families, in all their forms of diversity.”

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