A team approach is required to care for kids with more challenging medical conditions.
with complex and chronic medical conditions, including diabetes, cerebral palsy, congenital heart disease, neurological issues and more, are, thankfully, rare. They represent less than 10% of the population covered by Medicaid. However, their care accounts for about 40% of such spending, according to the Children’s Hospital Association, and it requires an array of clinical specialists, as well as coordination across many health disciplines and outside the hospital’s walls.
“Having a multi-disciplinary team helps to take off some of the load from the medical provider because there's so much else that's going on,” said Dr. Hilary Frankel, a pediatrician and assistant professor of pediatrics at Children’s Hospital at Montefiore in New York, during a recent webinar hosted by U.S. News & World Report. “You need a full team,” she said, which also requires community-based support that might include nurse practitioners, social workers, school-based service providers and more.
Identifying the best care plan often starts with defining an individual’s medical situation, especially if it is progressive, since “complex condition” can have many different definitions. “It makes it a little bit more difficult for cross-comparison and establishing and transferring best practices,” said Dr. Katherine Freundlich, an assistant professor of clinical pediatrics at Vanderbilt University School of Medicine who directs family, community and referring network engagement for the Program for Children with Medically Complex Needs at Monroe Carell Jr. Children’s Hospital at Vanderbilt. How conditions are defined can affect how programs and infrastructure to manage them are built, she said.
It’s vital to integrate patients and their families “into the design, implementation, facilitation and evaluation of programs that are serving them,” said Dr. S. Margaret Wright, a general pediatrician at Children’s Mercy Kansas City who provides primary care for children with medical complexity. “We really see parents and caregivers very explicitly as our partners.” Children’s Mercy has set up “invaluable” patient and family advisory councils, she said, and it frequently seeks feedback from families.
Where possible, children’s hospitals and care providers are using data and population health tools to manage patients with complex conditions more effectively. One stark reality to caring for complex cases is that so little of care actually occurs inside of a hospital or health care setting. “That's really where our big gaps are,” said Dr. Rona Sonabend, division chief of pediatric diabetes and endocrinology at Texas Children’s Hospital. The COVID-19 pandemic both forced and allowed for an increase in telehealth, which, along with keeping care going, allowed clinicians “to see inside of homes,” Sonabend said, and discover, for instance, what kind of diet a patient with diabetes had at home or if families had a fridge to safely store insulin.
“It was only understanding what was happening at the community level, at the home environment, that allowed us to really target direct outcomes for the patient,” she said.
Freundlich agreed that “we need a huge investment in this home- and community-based services space.” She noted that shortages of home health aides and nursing services predated the pandemic and were exacerbated by it. “I can't overstate how important the home and community care is for these patients.”
Another focus is on providing parents and guardians with the training and support they need to care for their children. Often, gaps in health literacy, for example, pose substantial obstacles to medication adherence or proper use of medical equipment. In addition to ensuring that written materials are in clear and appropriately plain language, it’s important to “make sure that we're supplementing with verbal information or visuals, and then using tools like teach-back to check for understanding,” Wright said. She recommended “always checking with families and never making assumptions.”
Home assessments are also critical. One program that assessed and helped alleviate mold in the home “had the biggest predictive outcome for managing asthma and decreasing hospitalization rates,” Sonabend said. “I think we need to collectively think about ‘How do we assess patients?’ but then, ‘How do we intervene once we get the information from those assessments?’”
Cost is, of course, a major challenge. Complex conditions often correlate to impoverished neighborhoods, and the costs accrued beyond just health care can be prohibitive. Even in New York state, where Medicaid coverage is robust, “we run into issues all the time,” Frankel said. “Our patients and families incur a huge amount of excess cost, whether it's missed days of school, unbelievable amounts of missed work for parents, parents losing jobs because of nurses calling out, nursing shortages – somebody has to be there to take care of their child who can't be go to a typical day care or babysitter.”
“One of the first things that we do for new patients … is identify what are all the possible resources and how do we tap into them,” Wright said. This includes providing help with supplies and with legal and insurance coverage issues, she added.
Sonabend encouraged leaders in this field to “take a population health mindset,” incorporating data collection, analytics and building predictive models. “The places that have been successful at doing that are starting to show real outcome improvement for not just an individual patient, but really at a population level. That's going to change our value-based propositions for how we get care and coverage services and then how we provide access to patients and, hopefully, how we change the outcome in the course of these patient’s lives and the family's lives.”
Such a population health approach, launched about 10 years ago, has helped Texas Children’s Hospital care for patients with diabetes, Sonabend said, and it also drove a successful advocacy program to push for policy changes, which can also be critical. “We have the information,” Sonabend said, to provide that data to patient and industry advocacy groups. “In partnership, what we bring to the table is this wealth of knowledge and data related to what the inequity of care looks like.”
As a final tip, Freundlich said that one of the “simple but important things” that families can do is to share their story. “And share it broadly, because there are lots of people in society who are very unfamiliar with children with medical complexity and the lives that they and their families lead,” she said. “Your stories are powerful, and they can change minds and hearts to build more of a groundswell towards action on some of these important issues.”