• Article
  • October 4, 2017

Engaging Families to Improve Care for Children with Medical Complexity

This is the ninth installment in a series on the CARE Award: "Coordinating All Resources Effectively." CARE is the basis of a national hallmark study aimed at improving quality outcomes and reducing costs of care for children with complex medical conditions enrolled in Medicaid. Children's Hospital Association partners with 10 of the nation's leading children’s hospitals on the CARE program, which encompasses more than 8,000 patients, as well as their caregivers and health care payers.

Here, we check in with one of CARE's participating institutions, UCLA Mattel Children's Hospital in Los Angeles, California.

With research already underway at UCLA Mattel Children's Hospital aimed at reducing hospitalizations among children with medical complexity, it didn't take long for Carlos Lerner to see the benefits of the CARE Award program for his hospital.

"There was a great synergy between what we were doing in our study and what we were doing with the CARE Award," says Lerner, M.D., MPhil, chief medical officer for the Pediatric Medical Home Program at UCLA. "As we were developing the action plans for CARE, we were able to learn from this and vice versa."

The Pediatric Medical Home Program, which provides primary and urgent care as well as care coordination for UCLA Mattel Children's Hospital's medically complex patients, has existed since 2003. Two key components of the Pediatric Medical Home Program align well with the CARE Award's mission: aiming to improve pediatric health outcomes with focused care planning and family involvement.

Growing parent involvement

UCLA Mattel Children's Hospital's Pediatric Medical Home Program includes a Parent Advisory Group, established to provide patients' parents with a support system: a place to share resources and advice. The Parent Advisory Group has met monthly since the Pediatric Medical Home Program's inception, and provides feedback to the hospital to help guide the direction of the program. Their influence has grown with the introduction of the CARE Award.

"With the CARE collaborative, we have really expanded the role of the Parent Advisory Group," Lerner says. "They play a much more central role in our quality improvement efforts, and we've begun to provide financial support for attendance at these meetings. This has really been a helpful component of our participation in CARE."

Planning is central to care

Each patient in the Pediatric Medical Home Program receives a care plan that includes outcome goals and important notes on the child's care. The care plan is embedded into the patient's electronic health record, so any member of the health care team can easily access the information. Additionally, the care team works with the patient's family to devise an action plan to anticipate the most likely reasons for an emergency department (ED) visit, and then creates a strategy to prevent it.

The key, according to Lerner, is the collaboration with the patients' families in designing these plans.

"One of the most gratifying aspects is all of the care plans begin with the families' short- and long-term goals," Lerner says. "This has opened up a lot of discussions with families, and it has changed the way we do care planning."

Proven success

The Pediatric Medical Home Program serves about 300 patients, 251 of whom are enrolled in the CARE program. Due to capacity constraints with current staffing levels, a wait list is necessary. The good news: the hospital's research shows a profound impact on patients once they are enrolled in the Pediatric Medical Home Program.

While CARE Award findings are in process and pending, UCLA Mattel Children's Hospital has compared Pediatric Medical Home Program patients to those on the wait list:

  • Patients in the program average 0.75 hospitalizations per year vs. 1.50 for those on the wait list
  • Patients on the wait list average twice as many ED visits as their counterparts in the program
  • Pediatric Medical Home Program patients visit their primary care physician an average of 3.6 times per year, compared to just two visits annually for wait list children

Lerner is hopeful that the program’s success can lead to a better payment model in the future, allowing the program to enroll every qualifying patient.

About CARE

In partnership with 10 of the nation's leading children's hospitals, the Children's Hospital Association received a three-year $23 million Health Care Innovation Award from the Center for Medicare and Medicaid Innovation. Of the roughly 3 million medically complex children nationwide, two-thirds are covered by Medicaid. These 2 million children represent nearly 40 percent of costs. They are clinically fragile and have intense medical and care coordination needs that are not always met by existing care delivery and payment models.

Send questions or comments to magazine@childrenshospitals.org.

Read other CARE hospital case studies.

This publication was made possible by Grant Number 1C1CMS331335 from the Department of Health and Human Services, Centers for Medicare & Medicaid Services. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. Pub# 3219, Approved 9/29/2017