Children with progressive illness and severe genetic or other chronic conditions are referred to as children with medical complexity (CMC). Many have cognitive and physical impairments and must use one or more medical devices that assist with their vital functions at home. These include feeding or breathing tubes, central lines, or other technologies. Complications with these devices, such as a dislodged breathing tube or a catheter infection, can lead to frequent emergency department visits and hospitalizations. Family caregivers must be well informed and constantly vigilant. Within the University of Wisconsin Department of Pediatrics, Ryan Coller, MD, MPH, associate professor and chief, Division of Hospital Medicine, has been working with these children, their parents, and other caregivers for more than 11 years.
A Wisconsin native, Coller earned his BS in bacteriology and philosophy at UW–Madison and his MD at Johns Hopkins University School of Medicine. He served his internship and pediatric residency in the UCLA Community Health and Advocacy Training Program. Then, while a fellow in the Child and Family Health Training Program, Coller earned a Master of Public Health at the UCLA Fielding School of Public Health. He served as the medical director of the UCLA Medical Home Program, a primary care program for medically complex children, from 2011 to 2013, as well as director of pediatric quality at the Mattel Children’s Hospital UCLA from 2012 to 2013.
Coller returned to Wisconsin to join the Department of Pediatrics faculty in 2013. “My family is in the Midwest,” he said. “Madison is great, and the Department of Pediatrics was very welcoming and encouraging of my work: a perfect fit for me.”
He immediately collaborated with Mary Ehlenbach, MD, associate professor, Division of Hospital Medicine, to launch the American Family Children’s Hospital Pediatric Complex Care Program (PCCP) in 2014. Ehlenbach serves as the program’s medical director, while Coller’s role is research director. The program is designed for children who have medical conditions affecting at least three organ systems and requiring the care of three or more specialists, and who have had a hospitalization or more than 10 clinic visits within the past year. The purpose of PCCP is to enhance coordination across medical specialties and settings, ensuring that every specialist and caregiver involved is as informed as possible about the children’s conditions, medical devices, medications, and related concerns.
In 2014, the PCCP was quickly supported as part of a $9.45 million Centers for Medicare & Medicaid Services (CMS) Innovation Award granted to the State of Wisconsin Department of Health Services. Coller focused his lab on designing and testing clinical interventions to improve family-centered outcomes for children with medical complexity. The research group develops innovative means of preventing CMC hospitalizations through supporting the health care that families provide for their children at home. “One of our aims is to develop health care delivery technologies that help to bring caregivers together and put parents back in the driver’s seat,” Coller said.
In 2019, he, Ehlenbach, and human factors engineer Nicole Werner, PhD, were awarded a pilot grant for the development and testing of a caregiver learning health system (LHS) to support in-home caregivers, using enteral care management as an initial model. Researchers selected management of enteral tubes — feeding tubes — for this initial study because it was feasible, and it was specifically chosen by family caregivers as an area in which they wanted more guidance. Their mobile application Tubes@HOME is an LHS strategy that links systematically collected real-world data with evidence to inform caregivers, allowing them to provide better care. One intended outcome is to increase caregivers’ knowledge, confidence, and efficacy. This will likely reduce caregiver stress and result in fewer emergency department visits and hospitalizations. Tubes @HOME was designed by parents, and results of feasibility testing of the app were published in Hospital Pediatrics in July 2022. Testing with families indicated that the app required a low mental workload and offered usability and usefulness.
This testing of the Tubes@HOME mobile application is what Coller sees as the first step toward a digital platform that could potentially provide connected, comprehensive assistance for caregivers — family members and others who are not doctors — providing health care for a wide range of vulnerable people at home. Real-time information and real-time strategies can enhance caregivers’ confidence and reduce their stress. Coller recounted, “One parent told me he hadn’t had a day off of caring for his child in 16 years because he didn’t feel comfortable that things would be done correctly if he wasn’t there.”
Coller and his research team are working to give caregivers real-time assistance — and a day off now and then. Further testing of an updated version of Tubes@HOME, called MedS@HOME, will begin in early 2023. In support of this work, the Agency for Healthcare Research and Quality recently funded his project “Improving medication safety for medically complex children with mHealth across caregiving networks,” which is focused on improving medication management for children with medical complexity across all of their caregivers.
“The day-to-day health of these children is very dynamic — they can go from pretty healthy to pretty sick very unexpectedly,” Coller said. “Some of them require the administration of 40 medicines per day, with a narrow window of accuracy.”
The aim of the MedS@HOME project is to help children, families, and other caregivers in the care of chronically ill individuals. Its goals are to increase medication administration accuracy, reduce adverse events, and improve chronic care management. Coller expects it will be eventually offered as a free application. Coller noted that expansion of the platform could assist not only children, but also, for example, elderly people who rely on home health care workers.
Coller and his team continue to develop mobile health innovations — mHealth — to increase caregiver knowledge, skill, and confidence through these tools. Currently they are conducting an NIH-funded trial called RE-PACT, an adaptive digital health caregiver coaching intervention delivered during periods when caregivers have low confidence, which can be identified through their text messaging. The team is determined to find ways to improve both the lives of caregivers and children.