“I Could Stop and Breathe”: Early Implementation Results of a Short-Term Care Coordination Model for Children with Medical Complexity

TL;DR

A short-term care coordination model for children with complex medical needs shows early promise in reducing family stress and improving healthcare access in Australia.

Contribution

A novel short-term care coordination model with an intensive phase and maintenance phase for children with medical complexity.

Findings

The model led to more coordinated appointments and reduced travel for families.

Families experienced 'coordination respite,' easing the burden of managing their child's care.

The model shows potential for sustainable, long-term care coordination with family empowerment.

Abstract

Children with medical complexity (CMC) are a vulnerable population with high healthcare utilisation and significant care coordination challenges. This study evaluates the early implementation results of a short-term Care Coordination Model designed to address these challenges within the Hunter New England Local Health District (HNELHD) in New South Wales, Australia. The Model aims to provide an intensive, time-limited “dose” of care coordination, followed by a Maintenance Phase, to improve healthcare use and reduce the coordination burden on families and healthcare staff.

The Model consists of two phases; an Intensive Phase led by a Paediatric Care Coordinator, providing focused support and care planning for 6–12 months, and a Maintenance Phase where care is handed over to a member of a Paediatric Care Coordination Network for ongoing monitoring and support. A pre-post evaluation of hospital utilisation data for the first 20 children enrolled in the Model was conducted, covering six months before and six months after enrolment. Outcomes measured included outpatient appointments, coordinated appointments, inpatient stays, emergency department presentations, and travel distance for care.

The early results from the pilot phase indicate promising outcomes. The Intensive Phase of the Model has led to more coordinated appointments, and reduced travel for families. The concept of “coordination respite” emerged as a significant benefit, where families experienced relief from the constant pressures of managing their child’s care. This respite allowed families to regroup, organise, and find the mental space to learn how to better coordinate their child’s care independently. The Intensive Phase provides critical support during the most demanding times, while the Maintenance Phase is positioned to support sustained, long-term assistance.

The early implementation of the short-term Care Coordination Model for CMC in HNELHD shows significant potential. The Model’s intensive, time-limited approach, combined with a Maintenance Phase and a strong focus on family empowerment and Network collaboration, offers a sustainable approach to care coordination. Future research should continue to explore the optimal dose of care coordination that is aligned with the principles of value-based care and further evaluate the Model’s long-term impact, beyond the Intensive Phase.

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