Enhanced Care Coordination

Children with medical complexity (CMC) require intensive care and support from multiple health care providers and community resources. Their families often report fragmented care due to a lack of active coordination between these services. This fragmented care may encompass duplicative or unnecessary services, unmet needs, excessive wait times, and missing information needed to make the correct medical decisions. The fragmentation is reflected on a family’s care map.

Care coordination is crucial for optimal health and health care for CMC. All services need to be proactively managed and delivered in an efficient and effective manner. The CARE Award identified and tested several change concepts with potential for significantly improving care coordination, including dynamic care teams (DCT), access plans and care plans with shared goals. By implementing a care coordination system, children’s hospitals are positioned to reduce avoidable utilization, and improve the patient and family experience. However, new payment models, along with a sustainability plan, are needed to transform the delivery system.

Care transformation in the CARE Award was built on a set of closely related change concepts designed to be developed jointly with families and providers.

Each CARE site will have a patient registry

Registries are essential tools for population assessment and management, and quality improvement, both within individual practices and across the continuum of care.

Every child/family will have a dynamic care team (DCT)

Care of children with complex needs requires an effective, informed and coordinated team. The family drives the composition of the DCT and is a critical partner to other members of the team. DCT membership is representative of the care continuum that includes health care, and community and educational, providers. DCT members recognize each other by name and role, and have effective systems for timely communication among team members.

Every family will have an access plan containing three components:

1. An after-hours access plan that describes how and when to contact the appropriate clinical provider for health care issues. Every patient and family needs to know who to contact and how to contact them to access the right provider for the right care at all times. A provider must be available 24/7. The access plan should include a listing of all DCT members with contact information and preferred method of contact to expedite access to care.

2. A contingency plan that contains instructions for parent action when the child experiences a change in condition. It describes how and when to contact the appropriate clinical provider for health care issues. These plans are developed from scenarios suggested by families that are likely to result in their child going to the ED. The contingency plan should contain actions to prevent an acute exacerbation, actions if an exacerbation occurs, and what to do if the child does not improve, e.g. when to call 911 or take the child to the ED. It would also outline the accommodations needed for other children in the house, notification of family members, etc.

3. An emergency care plan that provides essential information for emergency responders or ED personnel who are not familiar with the child to expedite effective treatment and communication with the child’s medical home/subspecialty providers. This includes a brief medical history and description of child’s baseline condition, current medications, common presenting problems with suggested diagnostic studies and/or treatment, procedures to avoid, important family preferences, a list of the child’s physicians/their contact information and an advanced directive form.

Each family will have a care plan based on patient/family goals developed via a shared process between clinicians and child/family

There is a standardized approach (including standardized documents) to care planning used with every child and family. Goals are developed from the assessment of family needs and assets for care planning. Providers and the child/family have the same understanding of roles and acknowledge the same patient goals. Care plan includes action steps to assist child/family attainment of goals. Families and providers across the care continuum have access to the care plan.

The Importance of Care Coordination

This short, self-paced course describes how coordinating a broad range of services puts families at the center of care and improves outcomes for CMC.

Launch Module

Reflections on Care Coordination

CMC require the coordination of a myriad of supportive services from across the continuum to achieve maximum health and wellness. This white paper shares strategies to improve coordination of care for CMC and their families employed by practice sites as a part of the CARE Award.

Read Paper

The Essential Role of Care Coordination

Hear project champions from several CARE Award hospitals explain how care coordination is an essential part of improving care management for children with medical complexity.

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