• Article
  • December 10, 2018

Optimal Care Design For Children with Complex Medical Conditions

To address care coordination issues for children with complex medical conditions, hospitals focused their efforts around three key areas: comprehensive care plans, access and contingency plans and transition programs to adult care.

Beyond the obvious emotional and financial tolls, coordinating care for children with medical complexity can be a tremendous challenge for families. According to David Bergman, one in five parents of children with medical complexity spend at least 11 hours per week coordinating care. Many are forced to reduce work hours—or quit their jobs altogether.

Medical students participate in rounds to learn how to better care for children with complex medical conditions.

Want more information on the CARE Award?

Learn more about the CARE Award, including lessons learned by participating hospitals, preliminary findings from the project and CARE Award success.

The CARE Award's participating institutions are presenting webinars to share their work from the project. Leaders from St. Joseph's Children's Hospital in Tampa, Florida; UCLA Mattel Children's Hospital in Los Angeles, California; and Wolfson Children's Hospital in Jacksonville, Florida; gathered recently to discuss findings related to improving the design of care coordination for children with medical complexities.

This is the second installment in a new series on the CARE Award, Coordinating All Resources Effectively. The CARE Award is a landmark national study aimed at improving quality outcomes and reducing the cost of care for children with medical complexity (CMC) enrolled in Medicaid. Funded by the Center for Medicare & Medicaid Innovation, CARE is designed to test the concept of a new care delivery system supported by new payment models specific to CMC. Under the CARE Award, the Children's Hospital Association partnered with 10 of the nation's leading children's hospitals, eight state Medicaid programs and Medicaid managed care organizations (MCOs,) more than 40 primary care practice sites and more than 8,000 children and their families.

"The impact of caring for children with medical complexities is considerable," says Bergman, M.D., medical director of the Lucile Packard Children's Hospital's Complex Primary Care Clinic and the CARE Award medical director. "These kids often see multiple specialists. In addition, they must coordinate their care across community agencies that are often involved with development, rehabilitative services or schools."

To address these care coordination issues, hospitals participating in the CARE Award focused their efforts around three key areas: comprehensive care plans, access and contingency plans and transition programs to adult care.

Addressing the cycle of hospital visits

During his 18 years as a critical care specialist in St. Joseph's Children's Hospital's intensive care unit, Daniel Plasencia would often see the same children return to his unit time and again.

"These patients would tend to come back to our emergency room frequently and sometimes stay in the hospital for longer periods of time because they were sicker," says Plasencia, M.D., FAAP, medical director of St. Joseph's Children's Hospital's Chronic-Complex Clinic. "No one would see them in the outpatient setting to provide the preventive health care that they needed."

Local pediatric facilities weren't set up to provide the coordinated care and wraparound services these kids desperately need. This vicious cycle of hospital visits drives the Chronic-Complex Clinic's mission—to provide continuous, comprehensive and coordinated care for the most medically vulnerable children in the community.

A care plan that travels with the patient

Each patient's care team builds a comprehensive standardized care plan based upon the short- and long-term goals devised in collaboration with the patient and his or her family. The care plan contains all medication information and pulse points on health care, education, environmental and developmental concerns. It's also formatted so that anyone—clinical or not—can read and understand it.

Importantly, since not all facilities share the same EMR, the care plan travels with the patient. Every Chronic-Complex Clinic patient takes home a large detailed binder containing all aspects of his or her care plan; the binder allows easy access to the patient's care plan for any caregiver the patient may see.

Building thorough plans—assume nothing

The Pediatric Medical Home Program at UCLA Mattel Children's Hospital enrolls more than 300 patients with highly complex medical conditions. All have two or more organ systems affected by chronic conditions, and 70 percent are technology-dependent. With a high occurrence of hospitalization and ED visits, Carlos Lerner and the Pediatric Medical Home Program team aimed to craft thorough access and contingency plans.

The first step: assume nothing. A complete plan should include all the information a family would need in a medical crisis; even seemingly basic details—like contact numbers—shouldn't be overlooked. "There was information we assumed that families had at their fingertips," says Lerner, M.D., MPhil, medical director of the Pediatric Medical Home Program at UCLA Mattel Children's Hospital. "We learned throughout the process that even many of our well-established families didn't know our urgent care or clinic hours."

Other key points to consider when developing and implementing access and contingency plans, according to Lerner:

  • Family involvement. Patient families can help identify issues that may lead to hospitalization and build the plan jointly with the care team. When complete, have the family teach the plan back to you to ensure everyone is on the same page.
  • Format. The plan should be clear and easy to read. Large fonts, abundant white space and color coding are helpful.
  • Language. Write to your audience by avoiding medical jargon. Simple words, short sentences and short paragraphs enhance readability.

Lerner says the implementation of the access and contingency plans is making an impact. More than 40 percent of parents report using their child's plan in the previous three months, and a study conducted by the Pediatric Medical Home Program shows a 50 percent reduction in hospitalizations and ED visits after the plans were introduced.

Providing assistance for every step of the patient journey

Wolfson Children's Hospital's approach to optimal care design focuses on assistance for children with medical complexity at every potential stage of the journey all the way into adulthood. To accomplish this, the hospital has assembled multiple practices under one umbrella—the Bower Lyman Center for Medically Complex Children:

  • Medically Complex Clinic. Caring for these children from birth, it serves as the primary pediatric medical home for patients with chronic complex medical conditions. The clinic's team coordinates ongoing care among several pediatric specialists and possibly specialized medical equipment.
  • Physical medicine and rehabilitation. Comprehensive therapy services help children of all ages with sensory, movement, feeding and communication difficulties. Specialty clinics include those treating cleft palate and craniofacial problems, neurosciences, spinal defects and spasticity management and rehabilitation.
  • Palliative care. From diagnosis and continuing throughout a child's illness, the focus of this program is to enhance quality of life for the patient and his or her family. The clinic addresses psychological, medical, social and spiritual needs in a format and venue most compatible with the family.
  • Transition care. Jacksonville Health and Transition Services (JaxHATS) is a primary care medical home for children with complex medical conditions between the ages of 16 and 26. Services range from care coordination and medical referrals to the educational and vocational training necessary to help transition these children to independent adult lives.
  • Pediatric Wellness Center. Modeled after Wolfson Children's Hospital's Medically Complex Clinic, the Pediatric Wellness Center aims to provide a primary mental health home for patients with complex mental or behavioral health conditions. According to Jeffrey Goldhagen, with one in five children suffering from some type of mental illness—and andonly 20 percent of those children receiving treatment—this center fills a vital need.

"These statistics are a validation of why this is important in our community," says Goldhagen, M.D., M.P.H., medical director of Community PedsCare and Community Hospice of Northeast Florida, Wolfson Children's Hospital. "It's important because of the seriousness and breadth of mental health conditions combined with the lack of access to mental health services that exists in pretty much every community around the country."

Send questions or comments to magazine@childrenshospitals.org.

This publication was made possible by Award 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. The research presented here was conducted by the awardee. Findings might or might not be consistent with or confirmed by the findings of the independent evaluation contractor.