Duke Children's Complex Care Service aims to coordinate longitudinal care across the continuum for children with medical complexity.
Children with medical complexity (CMC) represent approximately 1 percent of children, yet they account for a disproportionately high percentage of total pediatric expenditures. Parents and caregivers for CMC often struggle to know which providers are accountable for organizing and directing their child’s overall care needs. As a result, parents and caregivers typically shoulder the burden for coordinating these complex care needs, which leads to fragmented care and a dissatisfying patient experience. As medical technology and survivorship improve, the total number of complex and costly CMC patients will continue to grow. To best support this population’s unique needs, enhanced longitudinal care coordination across the continuum is necessary.
What We Tried
We implemented a tertiary care-centered specialty medical home model for CMC patients with the majority of their pediatric specialty care centered at Duke Children’s. We launched the Duke Children’s Complex Care Service (CCS) in August 2014 and today have 33 enrolled patients. Our team includes a pediatrician, nurse-clinician and program coordinator. Our program’s primary aim is to take clinical responsibility for the comprehensive, longitudinal care coordination needs of our enrolled population. To achieve this aim, we provide proactive, patient-centered care coordination and efficient healthcare system navigation. Examples of specific interventions in the inpatient environment include hospital consultations (i.e., daily clinical follow-up when patients are admitted), intensive hospital-to-home care transitions and creation of patient-specific complex care plans that are subsequently updated on a regular basis. In the outpatient environment we arrange complex care clinic visits, provide 24/7 availability for families, make regularly scheduled follow-up contacts, and facilitate communication to bridge the gap between primary care and specialty providers.
In a preliminary program evaluation, we found early improvements in healthcare utilization, including fewer emergency department (ED) visits and an approximately 1 day reduction in average length of stay. Additionally, by cultivating trusting relationships with our families, we gained the opportunity to provide long-term support for a subset of hospitalized CMC patients with extreme levels of medical complexity, technology dependence and hospital lengths of stay. In these outlier cases a discharge to home was unachievable prior to CCS program enrollment. In each case we partnered with families and provider teams to implement a patient-specific plan of care that spanned the continuum from inpatient to long-term outpatient care. As a result, each family achieved their goal of getting and keeping their child at home, which resulted in numerous hospital days avoided (when they otherwise would have remained hospitalized), as well as substantial cost savings. More importantly, as a result of this shared medical decision-making focused on patient-centered goals, patients and families had a more satisfying experience.
Our specialty and primary care colleagues have been very supportive of the CCS program. Because of the myriad time and clinical pressures faced by outpatient providers, many simply lack the necessary time to provide comprehensive care for such complex patients. Due to our program’s smaller population of highly complex patients, our team can dedicate additional focused time and energy, thereby providing a valuable resource for our colleagues, as well as our patients.
Presently there is no gold standard definition for CMC, so it is important to select objective criteria that can be consistently applied. Working with a CMC population can be both clinically and emotionally challenging; therefore, carefully consider the balance between high caseloads and intensity of care coordination. We decided to grow slowly by focusing on intensive hands-on work with each family at the expense of quickly accruing high caseloads. By adopting this more deliberate growth plan we maintained closer contact with families, remained more responsive to needs and crises, and buffered our team against burnout.
The multi-disciplinary structure of the CCS is vital and enriches our services. Because of the clinically complex nature of CMCs needs, close involvement of attending-level physicians is a key component. Selection of nurses and/or advanced practice providers with experience in complex care is a plus.
Patient-specific complex care plans have proven to be invaluable. The sheer volume of medical records available for CMC makes it challenging for clinicians to quickly and accurately identify critical information. Our complex care plans live in the electronic health record and include pertinent medical history, patient-specific emergency/crisis care plans, contact information for involved providers and outpatient care coordination teams (e.g., home health agencies), and detailed information about medical equipment/technology. These care plans can be particularly helpful during emergency and transitions situations (e.g., ED visits, hospital admissions, post-discharge care).
Relationships with families are the backbone for everything that we do. We are most successful when we meet people where they are, and strive to make what matters to our families that which matters most to our team. This alignment with priorities of our families built upon a trusting relationship provides cohesion and purpose to our work.