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

Introduction

Children with medical complexity (CMC) represent a vulnerable population at high risk of care fragmentation and poor quality of care [1]. CMC may be defined as children with multiple chronic health conditions that affect multiple organ systems, resulting in functional limitations, high health care utilisation and often the need for medical technologies [234]. CMC and their families often encounter significant disruptions and challenges in navigating healthcare, including managing frequent hospital visits, aligning appointments with multiple specialists, and navigating varied medical and support service systems [5]. These challenges are compounded by the complexities of coordinating care across multiple services and providers, making it difficult to manage their health effectively. Despite being 1% of the paediatric population, CMC account for over 30% of paediatric healthcare costs [6].

Before 2023, there was no consistent Model for coordinating care for CMC within the Hunter New England Local Health District (HNELHD) in New South Wales (NSW), Australia (Figure 1). Recognising the need for a structured approach, staff within HNELHD undertook a quality improvement project to facilitate the co-design and development of a novel Model of Care (MoC) to improve care coordination for CMC in the district.

Figure 1

Many integrated and coordinated care models described in the literature are specific to adult populations, metropolitan settings, or particular sub-specialties or diseases [7891011]. A noticeable gap exists in research exploring the optimal dose of care coordination, particularly for CMC, given the cumulative and often unsustainable nature of existing care coordination services. This study aims to fill this gap by evaluating the impact of a model that provides intensive, short-term care coordination for CMC.

This paper outlines early results from a pilot of the new Model. We assess changes in hospital utilisation six months before and after enrolling in the Model and share family and staff perspectives on the novel Model. Through this, we aim to contribute to the existing body of knowledge and influence future policies for the care coordination of CMC in Australia.

Setting

The study took place in HNELHD in NSW, Australia (Figure 1). HNELHD serves a diverse population of over 920,000 individuals, including a significant proportion of Aboriginal and Torres Strait Islander people and residents born overseas. HNELHD includes a major metropolitan centre as well as several large regional centres, smaller rural centres, and remote communities [12]. The paediatric specialty hospital in the district is the John Hunter Children’s Hospital (JHCH), located in Newcastle. JHCH provides specialised tertiary referral services for complex paediatric care, including medical, surgical, trauma, and neonatal services. It admits over 10,000 children and young people to hospital each year and performs over 100,000 occasions of service through outpatient clinics [13].

Ethical Approval

The study was approved by the Hunter New England Human Research Ethics Committee (2022/ETH00104).

Description of the Care Practice

Model of Care

The MoC that emerged from the workshops is comprised of two distinct phases:

1. The Intensive Phase: Led by a Paediatric Care Coordinator, this phase involves enrolment of eligible children into a six-to-twelve-month period of intensive care coordination support. Here, the Care Coordinator works with CMC and their families to create and initiate individualised care plans according to the specific needs of the child and family. Activities within this phase include multidisciplinary meetings, education, and coaching. Once the goals of the child and family are met, they then transition to the Maintenance Phase of the Model.

2. The Maintenance Phase: This phase involves reduced coordination activity with regular monitoring and review by a member of a Network of paediatric health professionals established as part of the MoC. This phase shifts from active coordination to sustained oversight and support.

Figure 2 depicts the MoC and the flow of children through the Intensive Phase of care coordination and into the Maintenance Phase.

Figure 2

The Paediatric Care Coordinator role is a full-time position funded by the Children Young People and Families Service within HNELHD, designed to be flexible in location and open to applicants from any healthcare profession. For this implementation, the position was filled by a physiotherapist and based in Newcastle, the metropolitan centre of HNELHD.

The establishment of the Network of paediatric health professionals was led by the Project Manager and Project Officer responsible for developing the MoC. Line managers and service groups from across HNELHD were initially engaged to secure support for the Network, with discussions focused on its objectives and potential benefits to patient care. Following this engagement, 40 members were recruited to the Network, primarily comprising Clinical Nurse Consultants (CNCs) from various subspecialty teams. Additionally, the Network included an Aboriginal Health Worker, a social worker, a mental health worker, and a multicultural health worker. The primary purpose of the Network is to:

• Provide a single point of contact for families who transition from the Intensive Phase of the Model.

• Act as a Community of Practice for care coordination in HNELHD.

• Support transparency and equitable distribution of care coordination tasks across Network/team members.

• Advocate for the alignment of consistent, practical and realistic approaches to sustainable care coordination across the district.

• Exchange resources, education and evidence-based practice.

As part of Model development, a range of patient-facing guides and resources were created and made available on the Service’s website. These resources, which include information on navigating the healthcare system, understanding the care coordination process, and accessing community support services, were co-authored or reviewed by consumer representatives involved in the project. While these resources had not been formally translated into other languages at the time of publication, they were accessible on the website, making translation through tools like Google Translate readily achievable. Links to the Service page and specific sub-topics were emailed or texted to families during or shortly after their first appointment.

Establishing cross-sector connections was a key focus of the project team, with the Project Officer and Project Manager playing central roles in building these relationships. These partnerships have now been embedded within the Model, supporting their sustainability beyond the initial Implementation Phase.

To support this, a portion of the Paediatric Care Coordinator’s role is dedicated to nurturing these established relationships and fostering new ones as needed. By integrating this responsibility into the Care Coordinator’s role, the Model is designed to maintain strong cross-sector connections in the long term.

Implementation

A 12-month pilot of the MoC commenced in April 2023. Eligible referrals (Table 1) were prioritised by the Paediatric Care Coordinator based on their vulnerability, instability, fragility, intensity, and complexity using a referral prioritisation tool (Table 2). Each criterion was weighted equally, with one point allocated to each criterion met. Children with the highest scores were ranked as needing the highest urgency of care coordination. Referrals that did not meet the eligibility criteria were not accepted into the Service. If there was any uncertainty surrounding child eligibility, the Paediatric Care Coordinator contacted the referring party directly to discuss the referral and determine eligibility.

The developed Model emphasised the importance of referring children who met the criteria as early as possible, ideally before they reached a point of crisis. Early referral allowed the Intensive Phase to focus on proactive care coordination, equipping families and their care teams with the tools and strategies to reduce the likelihood of future crises. However, if a family was referred during a period of crisis, the Paediatric Care Coordinator prioritised addressing their immediate needs. Once the crisis was resolved, the Paediatric Care Coordinator transitioned back to the more structured approach and cadence outlined in Figure 4 to implement long-term care coordination strategies.

The MoC was structured to provide comprehensive and individualised care planning for CMC. Central to this was the role of the Paediatric Care Coordinator (Figure 3), who worked in close collaboration with families to provide comprehensive care coordination and navigation support.

Figure 3

The Intensive Phase of the Model involved a series of virtual appointments with enrolled families to understand their situation, create an individual care coordination plan using goals of care and provide support with:

• Service coordination – facilitating communication between staff and families.

• Resource connection – linking families with relevant resources and support options.

• Documentation support – assisting with completing documents/forms associated with appointments.

• Navigation support – helping families understand and connect with services, systems and people.

• Advocacy and coaching – empowering families to coordinate aspects of their child’s care.

• Appointment coordination – assisting with streamlining appointments across multiple services.

The Paediatric Care Coordinator was provided with a laptop and phone, enabling them to work primarily through videoconferencing and phone calls to connect with families and clinical staff across the district. Although the role was designed for remote operation, being based in Newcastle allowed the Care Coordinator to meet families in person when they attended appointments at the tertiary hospital and have informal corridor conversations with clinical staff, facilitating care coordination efforts.

The Paediatric Care Coordinator primarily communicated with families through a mix of scheduled virtual appointments and phone calls. Ad hoc calls from families were generally answered throughout the day. If the Care Coordinator was unavailable, they aimed to return the call within the same day. At a minimum, a text message was sent to acknowledge the call and establish a suitable time to connect.

Family participation was a cornerstone of this Model. Families were encouraged to be actively involved in all aspects of care planning. This included attending all scheduled appointments, whether in-person or online, promptly responding to communications from the Paediatric Care Coordinator, and contributing to the planning process.

A major element of the Model was its focus on advocacy and coaching. The Paediatric Care Coordinator worked closely with the family to identify specific areas where they could benefit from coaching and support. This personalised coaching included practical guidance on how to complete transportation forms, how to request appointment changes, and how to prepare for appointments. Additionally, the Paediatric Care Coordinator helped families understand the different roles within the healthcare team.

By fostering a collaborative relationship, the Model not only supported families in managing their child’s complex care needs but also aimed to provide them with the skills and knowledge necessary to advocate for their child. This was vital for sustaining long-term engagement and equipping families to successfully coordinate care independently, even beyond the program’s direct support.

Figure 4 depicts the typical process that families experienced as they moved through the Intensive Phase of the Model.

Figure 4

Families enrolled in the Model remained in the Intensive Phase for six to twelve months. This included a minimum of four core check-in sessions, which provided structured opportunities to review progress, share updates, and refine goals. Between these sessions, families had ad hoc interactions with the Paediatric Care Coordinator, primarily via phone calls, to address immediate needs or concerns. As the Intensive Phase neared completion, the transition to the Maintenance Phase began. During this transition, the Paediatric Care Coordinator connected each child/family with an identified member of a Network of paediatric health professionals, who then took over as the primary contact for ongoing care coordination. This Network included 40 individual members representing key paediatric roles across subspecialty teams, facilities, and various locations within the district and adjacent districts. Network members were matched with families based on their specialty, location, and/or existing involvement with the child. In most cases, the child and family were already known to the Network member. This supported a smooth transition for the child and enabled the Network member to more efficiently and effectively incorporate care coordination tasks into their existing workload.

During the Maintenance Phase, Network members scheduled virtual or phone-based “check-in” appointments with families at intervals agreed upon by each individual Network member and family. These “check-ins” helped families remain supported post-transition and provided the opportunity to identify families who may have required re-referral to the Intensive Phase. There was no minimum timeframe for how long a child needed to be out of the Intensive Phase before being referred back in.

The Network convened virtually on a monthly basis and these meetings were chaired by the Paediatric Care Coordinator. Information sharing across the Network was supported by a dedicated Microsoft Teams channel and SharePoint site, accessible only by Network Members and the Paediatric Care Coordinator. This facilitated the secure sharing of resources and patient information across the Network and helped overcome the barrier of varying electronic medical record systems used across the district.

Evaluation

Findings

Population Study Characteristics

Between April 2023 and March 2024, a total of 44 children were referred into the Model. Of these, 39 were accepted. The reasons for not accepting the remaining five referrals included the presence of an existing role already coordinating care for the child in four cases and a parent declining enrolment in one case.

The average age of children at the time of referral was 3 years, with ages ranging from 2 months to 15 years. These children had a broad range of conditions, including rare genetic, hormonal, and metabolic syndromes, reflecting the heterogeneity of the referred population.

Children enrolled in the Model typically saw an average of 31 individual clinicians under eight separate specialties at the tertiary paediatric hospital. These figures represent just a fraction of their care landscape, as many also required support from a myriad of healthcare, disability, and social support professionals outside the tertiary setting.

Of the 39 children enrolled in the Model, 20 were enrolled early enough to be included in the pre-post analysis, as they had participated in the Model for at least six months.

The 20 enrolled children exhibited additional sociodemographic vulnerabilities, further complicating their care needs. Forty percent (n = 8) of children identified as Aboriginal or Torres Strait Islander. Five percent (n = 1) were from culturally and linguistically diverse (CALD) families requiring interpreter services. Seventy percent (n = 14) resided in rural or remote areas of HNELHD, while 30% (n = 6) lived in metropolitan areas. Ninety percent (n = 18) resided in socioeconomically disadvantaged areas (IRSAD decile ≤5), and 70% (n = 14) required social worker intervention. Of the 20 children, only two had transitioned to the Maintenance Phase at the time of analysis. Neither child required re-entry into the Intensive Phase, although ongoing monitoring will determine whether this becomes a factor over time. The remaining children were still within the Intensive Phase but were on track to transition to the Maintenance Phase within 12 months of their enrolment.

Impact on hospital utilisation and appointment coordination

A total of 153 outpatient appointments were attended by the cohort (n = 20) in the six months prior to enrolment, and a total of 139 were attended in the six months post enrolment.

In the six months prior to enrolment into the Model, 10% (n = 2) of children experienced coordinated outpatient appointments on the same day at JHCH. Six months post enrolment, this figure increased to 65% (n = 13). Children saw a median increase of 2 coordinated appointments over time (p = 0.002). Across the entire sample of 20 children, this corresponded to an increase of 4 (pre) to 49 (post) total appointments held on the same day. While initially these coordinated appointments constituted only 2.61% of the total appointments attended by the cohort, they now account for 35.25% of all appointments.

A total of 37 ED presentations were recorded for the cohort in the six-months before enrolment, with 55% (n = 11) of the cohort presenting at least once. In the six-months post-enrolment, the total number of ED presentations dropped to 14, with 40% (n = 8) of the cohort presenting at least once. However, the pre-post difference in ED presentations per child was not found to be statistically significant (p = 0.27). The location of ED presentations remained consistent pre- and post-enrolment, indicating no change in where children sought emergency care.

In the six months prior to enrolment, 60% (n = 12) of the cohort was admitted as an inpatient for at least one day, with a range of 1 to 5 admissions per child. The LOS per admission ranged from 1 to 136 days, totalling 276 days. In the six months following enrolment, 30% (n = 6) of the cohort was admitted as an inpatient for at least one day, with a range of 1 to 9 admissions per child. The LOS per admission ranged from 1 to 27 days, totalling 110 days. When comparing pre and post enrolment data, a non-significant median difference in LOS of –0.5 days was observed (p = 0.09).

The overall difference in the number of inpatient stays across the cohort was not found to be statistically significant (p = 0.11), with a mean of 1.15 admissions per child pre-enrolment and 1.2 per child post-enrolment. No significant difference was found either between pre-post DNA occurrences in the Model.

No significant differences in any measure of pre-post hospital utilisation were identified between children residing in urban or rural areas.

Impact for families of CMC

Over 60% of children enrolled in the Model travel away from their hometown for outpatient appointments at JHCH. Of these, 50% travel more than 200 kilometres to reach JHCH. Based on the observed increase in coordinated appointments and reduction in ED presentations for the cohort, an average of 303 km and median of 88 km of travel was saved per family in the six months following enrolment (p < 0.001). This can be translated to an anticipated average saving of 606 kms per family, each year. Where children reside rurally, this saving increases to 1000 kms on average per family, each year.

As part of routine quality improvement activities, families were asked to provide feedback on their experience with the Model. Families described the significant mental load they faced before enrolment, including juggling their child’s care alongside other responsibilities such as work and family life. Many shared that the support of the Paediatric Care Coordinator gave them the space to pause, regroup, and better organise their child’s care. Families felt more equipped to face challenges beyond the Intensive Phase, though this was not formally evaluated. This sense of relief and support was described as invaluable and has been referred to as “coordination respite,” reflecting the unique relief families experienced during their time in the Model.

Acceptability of the Model from healthcare providers

The NoMAD Survey was completed by 47 health professionals working with CMC in HNELHD (78% response rate). 83% of respondents acknowledged a shared understanding of the purpose of the MoC, and 87% could clearly distinguish the Model from usual practices, underlining its innovative nature.

Further, 96% of participants recognised the value of the Model, and 87% affirmed that engaging in the delivery of the Model aligns with their professional roles, indicating strong internal support for the initiative’s objectives. The ability to integrate the Model into existing workflows was highlighted by many respondents (85%). See Figure 5 for full survey results.

Figure 5

Examples of additional written feedback provided by health staff are included in Table 3.

Table 3

Written feedback from health staff.

“This is a worthwhile service for our kids and families.” “This service has been invaluable for the care of my complex patients who otherwise get lost amongst the many services they access within healthcare.” “The Network has been a great source of new info for me. It has made coordinating care easier for the kids I look after – even if they haven’t gone through the actual intensive care coordination with the Care Coordinator.” “I can already see how this service is helping to make clear who is doing what. It’s accountability, plus support. And I can see it is sustainable. It’s great to be part of the solution!”

Discussion

This study presents the early implementation results of a short-term Care Coordination Model for CMC. The significance of this study lies in its description of a Model that incorporates an intensive “dose” of care coordination, while simultaneously applying a Network approach to leverage the expertise and structure of the existing system and sub-specialty workforce. The early results, though limited in scale and focusing predominantly on the Intensive Phase of the Model, indicate a more efficient use of hospital resources, benefits to the enrolled families, and acceptability by staff.

The co-design process was central to the development of the Model. The project embraced co-design principles [19202122] by collaborating with families, healthcare professionals, and community representatives. Consumers were involved from the outset of the project, co-designing evaluation measures, communications, recruitment, and ethics protocols. This inclusive approach meant that the Model was practical and aligned with the needs of both families and healthcare providers.

The two-tiered approach to care coordination in our Model begins with an Intensive Phase where families receive focused support, goal setting, and comprehensive care coordination to address their immediate needs. Following this, the Maintenance Phase involves a representative from a newly established Care Coordination Network providing structured ongoing monitoring and support to families. This Network approach unites existing roles into a Community of Practice, reducing duplication of efforts and offering a single point of contact for families beyond the Intensive Phase. By clarifying responsibilities and assigning children to specific individuals within the care team, this approach is designed to minimise missed or duplicated work. Established in response to staff feedback about the lack of clarity in care coordination roles and responsibilities, this Network is set to provide continuity and sustained support for children transitioning from the Intensive Phase, reducing the risk of children slipping through the cracks. To our knowledge, this specific two-tiered approach is not discussed in existing research, but it is supported by evidence highlighting the importance of building workforce capacity for complex care coordination and the positive impact of Communities of Practice [2324].

Investigating the optimal dose of care coordination for CMC is important for creating value-based care models. Previous studies have indicated that continuous care coordination, while beneficial, can be challenging to maintain due to its cost-intensive nature [25]. By determining the optimal dosage of care coordination, healthcare providers can support CMC to receive the appropriate level of care to meet their unique needs. This approach aligns with value-based care principles, which aim to deliver the best outcomes at the lowest cost [26]. Implementing a time-limited, Intensive Phase of care coordination allows for focused intervention when families need it most, followed by a Maintenance Phase of sustained support without overwhelming resources. This Model not only addresses immediate healthcare needs but also aims to empower families to manage care independently in the long term, potentially reducing overall healthcare utilisation and costs. Additionally, the concept of “coordination respite,” a term developed during our project, highlights the significant relief families experience when provided with structured, time-limited support. This respite not only alleviates the immediate pressures faced by families but also restores their capacity to effectively engage in their child’s care, further emphasising the value of a well-calibrated care coordination model.

The Intensive Phase of the Model significantly increased the coordination of same day appointments. Coordinated appointments reduce travel, associated out-of-pocket expenses, and school and work absenteeism [27]. For families residing in rural and remote areas or those facing socioeconomic challenges, these savings are especially significant. These findings are supported by other research, which highlights the benefits of coordinated care in reducing financial, logistical and other strains on families [28293031].

In addition to enhancing the healthcare experience for children and their families, appointment coordination may enable more efficient and effective use of hospital resources [32]. Health staff involved in this study reported that same-day appointments reduced the need for repeat visits, procedures, and tests [33]. This approach also facilitated opportunistic immunisations and allowed multiple procedures to be performed under a single anaesthetic [34]. Consequently, hospital expenditure on administrative processing and the provision of hospital-based patient/family subsidies and services can be reduced.

Family empowerment is a core focus of the Model. Families were given the tools and support to navigate the healthcare system more effectively, which included goal setting, team communication, appointment and transport bookings, paperwork assistance, and understanding the health system. The resources provided to families were co-designed and co-authored with consumers. This approach aligns with previous research about building the capacity of families to navigate complex healthcare systems and to enable self-management where possible to assist in managing service demand [35].

The health of CMC is closely linked to the well-being of their families [4]. Adverse social determinants of health (SDHs) and adverse childhood experiences are associated with poorer health outcomes for children [3637]. The impact on caregivers is substantial, including chronic sleep issues, reduced time with partners and siblings, limited personal care, deteriorating mental health, and lower overall quality of life [2938394041]. Caregiver stress may hinder the execution of necessary medical care for CMC, underscoring the critical nature of this issue [42]. Without targeted social work support, barriers such as socioeconomic status and language differences may deepen existing disparities, compromising care quality and safety, and increasing family and provider strain [1943444546]. Integrating psychosocial elements and social work within future Care Coordination Models is therefore recommended as essential for addressing these risks and improving health outcomes for CMC.

Lessons learned

• Optimal dose of care coordination: Determining the optimal duration and intensity of care coordination is an ongoing process. Early findings suggest that families can transition from an Intensive Phase to a Maintenance Phase within 6–12 months, providing a foundation for further evaluation of this approach to support sustainability and scalability.

• Family empowerment: Building the capacity of families to navigate complex healthcare systems is vital. Providing tools, resources, and support enables families to manage their child’s care more effectively, reducing their reliance on healthcare providers and enhancing their ability to advocate for their child’s needs.

• Network approach: Establishing a Network of paediatric professionals across various specialties and geographic locations promotes cohesive care strategies and robust connections among care providers.

• Information sharing: Variations in clinical information systems across HNELHD created challenges for communication. Microsoft Teams and SharePoint were key tools that supported effective collaboration and information sharing among the Care Coordination Network and the Paediatric Care Coordinator.

• Psychosocial complexity: Piloting the Model highlighted the significant psychosocial needs of enrolled families, many of whom faced challenges such as financial hardship, social isolation, and difficulty accessing community resources. While the Paediatric Care Coordinator was able to assist with some of these issues, the demand and complexity of many situations exceeded the scope of their role. Addressing these needs often required referrals to general social work departments, which were frequently delayed due to waitlists. Future iterations of the Model should consider integrating a dedicated social worker to manage these needs more effectively and in a timely manner.

• Importance of defining role scope: The development of the Model highlighted variability in how the term “care coordination” is understood by different stakeholders. Clearly defining the scope of the Paediatric Care Coordinator’s role and the responsibilities of the Care Coordination Network was crucial for fostering a shared understanding of the Model and aligning expectations among staff, referrers, and enrolled families.

Conclusion

By incorporating an intensive, time-limited phase of care coordination followed by a maintenance phase supported by a Network of paediatric professionals, this Model addresses the unique needs of CMC and their families. Early results indicate improvements in operational efficiency, reductions in hospital resource utilisation, and enhanced family satisfaction. Moreover, the Model has shown high acceptability among healthcare staff, demonstrating strong internal support and integration into existing workflows. As the Model transitions into standard practice, ongoing evaluation of the Model as a whole will be crucial to refine and sustain its benefits, ensuring that it continues to provide value-based, family-centred care in the long-term.

Reviewers

Two anonymous reviewers.

Competing Interests

The authors have no competing interests to declare.