Children with Medical Complexity: One Health System’s Response to a Major Clinical Challenge

Medical complexity in children is a challenge that’s hard to overstate, both for the healthcare system and for individual families.

While medically complex children represent less than 1 percent of U.S. children, they account for up to 33 percent of U.S. pediatric healthcare spending, as recently reported by Berry and colleagues. On the individual level, their families often struggle to find a medical home, navigate the healthcare system and coordinate the multiple subspecialty visits required.

Defining terms — and shaping a response

A seminal 2011 paper published in Pediatrics defined children with medical complexity as having four key features:

• Substantial family-identified service needs
• Multiple chronic and severe conditions
• Major functional limitations often requiring medical technology
• High healthcare utilization

To optimally respond to the challenges young patients like these can face, Cleveland Clinic Children’s recently introduced its Pediatric Complex Care Clinic, located on Cleveland Clinic’s main campus.

“Our vision for the clinic is to provide a family-centered medical home for children with significant medical complexity,” says general pediatrician Skyler Kalady, MD, who serves as the clinic’s medical director. “We seek to provide high-quality care in a cost-effective manner to enhance family satisfaction. We offer access to the full spectrum of primary and subspecialty care in a coordinated fashion.”

In addition to Dr. Kalady, the clinic’s team includes:

• A dedicated pediatric nurse practitioner
• A dedicated nurse who serves as primary care coordinator
• A pediatric dietitian
• A social worker

Together, the team collaborates closely with caregivers at home and other clinicians involved in the child’s care.

A medical home for a unique population

Children with medical complexity are challenging for primary care practices because they have a variety of special needs, including:

• Longer appointment times to adequately address concerns
• Increased demand for outpatient acute access for frequent exacerbations, multiple subspecialty visits and scheduling challenges
• Care coordination to integrate multiple services

By providing proactive and comprehensive routine care as well as early and prompt acute care, the clinic seeks to reduce ED utilization, hospitalizations, readmissions, length of stay and care fragmentation while optimizing the patient’s experience

How the clinic works

Patients and parents have an initial two-hour comprehensive evaluation with the clinic’s team, during which an individualized care plan is developed. The care coordinator subsequently helps the family navigate the healthcare system, assisting with scheduling of multiple subspecialty appointments and providing other support as needed.

Patients continue to see subspecialists as indicated and return for follow-up visits at the Pediatric Complex Care Clinic every three to six months. The team is available for same-day acute visits on weekdays as new concerns arise.

Patients have access to a dedicated phone line and secure electronic messaging through Cleveland Clinic’s MyChart online tool. The care coordinator provides monthly check-ins via phone or MyChart to review the care plan and address interim challenges. A dedicated billing representative is made available to all patients.

Who’s a candidate?

The clinic accepts new patients from birth to age 16 who:

• Have or will have long-term complex healthcare needs
• Have major functional limits (often requiring use of medical equipment)
• Require the expertise of three or more pediatric subspecialists
• Desire a primary medical home at the main campus

Once a referred patient is deemed eligible, the clinic team contacts the family to schedule the initial evaluation.