A partnership model for children with complex medical conditions: The Champlain Complex Care Programme in Canada
This case study was written by Shaundra Ridha, Dr. Nathalie Cook-Major and Elke Loeffler (2013).
Introduction
Clinical and technological advances have allowed patients, including children and young people, to live longer with chronic illnesses. An almost unavoidable consequence is that some infants who would previously not have survived now live with significant physical and neurologic disorders.
According to the Provincial Council for Maternal and Child Health, in 2012 3,700 or 0.14% of Ontario children accounted for 50% of overall annual in-patient expenditures for all children. These patients are considered to represent the most technologically and medically complex cases in overall terms.
This case study shows how the Champlain region of eastern Ontario in Canada developed an innovative pilot project that has evolved into a partnership model to reduce the average cost of delivering health services to such patients, while enhancing their overall quality of life, by providing the right care, at the right time, in the right place, by the right care provider.
Objectives
In 2009 a partnership was formed with the objectives of improving coordination of care and reducing preventable hospital admissions by a group of organisations, including Champlain Community Care Access Centre (CCAC), Ottawa Children’s Treatment Centre (OCTC), the Children’s Hospital of Eastern Ontario (CHEO), Ottawa Children's Coordinated Access & Referral to Services (Coordinated Access) with oversight by the Champlain Local Health Integration Network (LHIN).
The goals of the Champlain Complex Care Programme were
- to provide a family-centred approach for technology-dependent, medically complex and fragile children and youth;
- to facilitate communication and collaboration among care providers;
- to coordinate needs across the system; and
- to relieve the burden on families of navigating the system alone, in order to aid in the overall objective of improving health status for those impacted.
A successful partnership approach was expected to improve the health of these children and young people and their families by supporting them to live at home, go to school, spend time with friends and participate in leisure and community activities with family and peers; while, at the same time, standardising the processes and identifying efficiencies in the overtaxed system upon which they rely for their continuing care needs.
Subsequently, programme partners agreed to scale up the partnership model after a three-year pilot phase from 2009-2012, so that it would be able to serve a greater number of the approximately 500 children and young people, who account for about 50% of the total ‘paediatric-weighted’ cases of this age group in the region.
Leadership and change management
The new model was strongly driven by the Chief Executive Officers of the founding partner organisations as well as the Champlain Local Health Integration Network (LHIN). The LHINs were created by the Ontario government in March 2006 as 14 not-for-profit corporations who work with local health providers and community members to determine the health service priorities of their regions of Ontario. While they do not directly provide services, their mandate is to plan, integrate and fund health care services and they oversee nearly two-thirds of the $37.9 billion health care budget in Ontario.
The Children’s Hospital of Eastern Ontario (CHEO) acted as the lead organisation in developing the model. Over the past 40 years, CHEO has established itself as a world-class centre providing leading-edge treatment and compassionate care for children and youth from the age of 0 -18 years. The project was identified as a priority project by the CHEO Family Forum (a hospital advisory committee, consisting of parents). The CHEO's large service area includes not only Ottawa, but also Eastern Ontario, Western Quebec, Nunavut and parts of Northern Ontario but, due to the funding sources, the programme focuses services only the Champlain LHIN for the moment and therefore does not provide services to families in Quebec and Northern Ontario.
The linkage to CHEO for specialized services, to CCAC, OCTC and CA for community-based services, and to the Champlain LHIN for oversight and guidance as the funding organisation, provides an organising structure that facilitates inclusion of primary care providers, a large proportion of whom are the paediatricians. This structure allows for easy integration, improved access and reduction of silos.
The programme partners established a governance structure to ensure evidence-based decision making, including both a Steering Committee consisting of family members and senior executives from each partner organisation and an Advisory Committee consisting of family members and middle management from each partner organization, as well as a Programme Team that is CHEO-based and runs the day-to-day programme.
The partners set up an inter-disciplinary programme team consisting of a project manager, several nurse coordinators and a Most Responsible Physician (MRP). the project manager and MRP were CHEO-based, the care coordinators were based in each partner organisation and were assigned to the patient and family based on an assessment of the unique care needs required and which partner organisation or combination of organisations could best meet those needs. Allied health care provider services (dietician, social workers, physio, etc.) were provided in kind by each organisation. Each of the partners in turn linked to other community providers, including respite care, service coordination, education, public health, palliative care etc. as depicted in the Care Coordination Model below.
33 patients and families were randomly selected to participate in a pilot after having met the programme’s defined ‘inclusion criteria’ which were:
- Multi-complex child (see complexity criteria)
- Medically fragile (see fragility criteria)
- Dependency on high intensity care/technological device
- Has an existing risk of an unexpected severe acute life-threatening event
- Has or is at risk of having a mental health diagnosis
- Between the age of 0 years and 16 years of age at by the date of admission
- Child is under the care of a family physician
- Child requires care co-ordination as a result of complexity.
- Child resides in the Champlain Local Health Integrated Network (LHIN) and uses the services of CHEO and/or Community Programs
Further details about the eligibility criteria can be found in the attached pdf.
Family-Focused Meetings were conducted that included patients, families, specialists, multi-disciplinary medical teams and allied health providers to assess the unique needs of each patient and determine if their care team should be hospital or community-based or a combination of both. In general, patients in the programme were receiving services of 11 medical specialities, 93.8% required specialised medical equipment and all were considered medically fragile.
The following diagram depicts the care and service providers involved with a “typical” child in the programme.
The pilot was evaluated in early 2013 with a view to scaling up the existing programme to serve more patients in the Champlain Region. In order to accomplish this objective the Care Coordination Model was maintained and the programme formalised its structure to include a Service Delivery Model with three levels of coordination to further meet the needs of a complex paediatric population and further integrate community and hospital providers. In this model the best care provider for a particular patient is determined by the patient condition and required interventions. Patients can move back and forth across the model based on their needs. The levels of care coordination are depicted in the following diagram:
Furthermore, the partnership proposed that the pilot project expand beyond the pilot to create the Champlain Complex Care Programme that would support a larger number of patients and extend to further community-based involvement.
Such a programme would offer the following additional benefits:
- Further extending the Partnership beyond healthcare to include education and community and youth services
- Establishing direct ties to other Ministries by inviting them to sit on Steering and Advisory Committees
- Partnering with primary care providers in the community
- Expanding the team of providers to allow for an increased number of children served by the program
- Establishing a shared Electronic Health Record (EHR), including an electronic referral system and patient portal to access test results and clinical information
- Continued Programme Evaluation and patient/family satisfaction evaluation with a larger population.
A further enhancement was that Rapid Response Nurses were put in place in November 2013 to reduce re-hospitalization and avoidable emergency department visits by improving the quality of transition from acute care to home care. These nurses will visit the homes of children with complex needs within 24 hours of discharge to ensure that discharge instructions are understood, to contact the primary care provider, to arrange for a follow-up appointment within 7 days and to assure the medication arrangements. Research has demonstrated that these activities decrease the risk of readmission to acute care.
Outcomes
What participating families say about the programme:
“Seeing one doctor instead of several is easier and more reassuring for our [child]. [Our child] opens up better when…gets to know someone well, therefore it is easier for the doctor to assess.” (Parent 2010)
“Maybe together you can improve family relief, improve ways to care for your special loved one without it taking a toll on your life … improve ways to understand the system better!” (Parent 2010)
“We feel safer as parents, we feel less alone in the system, and we feel supported by a solid team who knows our child’s multi-systemic and complex conditions well” (Parent 2012)
Success indicators
Overall, results from the pilot show improved access to care, increasing system throughput and providing long awaited coordination of services for families in Ottawa and surrounding areas, allowing them to ‘normalize’ their households, return to work and lead a family life as close as possible to normal.
In particular, the programme has demonstrated statistically significant decreases in in-patient services and increases in out-patient services. The programme was also able to improve the response time for consultations, and reduced duplication of services.
Similarly, the programme was seen to have beneficial outcomes and impacts on the health of the participating young people, as demonstrated through measurement of scales indicating increases in the strength of children and young people, and decreases in their needs (as demonstrated by Children & Adolescent Needs and Strengths (CANS) assessment).
Change in CANS scores
The results of the change in CANS scores for those individuals who were administered the 5-16 year old CANS-CC demonstrate positive impacts. Reductions in the CANS score and sub-scores indicate improvements for the individuals in the project.
As is evident from Table 1, statistically significant decreases in the CANS subscale scores of Functioning (medical and psychosocial), Strengths and the Total score were seen, providing some evidence that the CCCP is improving the functioning and identified strengths in these individuals. Though not statistically significant, a noticeable improvement also occurred in the intensity of health care needs with the initiation of the intervention. This provides further evidence that the CCCP does impact health outcomes in the children/youth that participate.
Due to the small sample size once the population was stratified, it was decided to carry out a further statistical test. Cohen’s d effect sizes were calculated to complement the test statistic. For this statistic, 0.2-0.5 is small; 0.5-0.8 is moderate; and 0.8 and higher is considered a large effect size. A glance at these effect sizes in Table 1 shows that even with the small sample sizes, large effects were evident, further confirming the impact of this service on the health outcomes of individuals.
Table 1.
Throughput of the programme
Approximately 15% of children/youth who participated in the programme have graduated, and are now equipped with the ability and capacity to navigate the overall health and social care system, using tools and documentation which give them full access to services in the community. The shift to community-based care is supported by a community care coordinator and a primary care physician (or paediatrician), once the patient’s condition has stabilised. This model allows for increased throughput and flow through the healthcare system and has the potential to extend the service of a complex care program to a larger population.
Satisfaction levels
Survey results have highlighted positive satisfaction from participating families, demonstrating the programme’s ability to identify and reach the right population, provide services that impact on health care utilization and health outcomes, and provide an intervention with which children and families are satisfied. Specifically, families report the following benefits from the programme interventions:
- No more need to answer the same question from a variety of providers.
- A noticeable reduction in duplicate procedures/tests and referrals.
- A single point of contact (care coordinator) whom they can call, eliminating unnecessary contacts with providers and unnecessary emergency department visits.
- An individualised comprehensive Single Point of Care (SPOC) plan, developed uniquely for each patient/family.
Costs and savings
The pilot project and subsequent Complex Care Programme has been funded by the Champlain Local Health Integration Network (LHIN) and the partner organisations, with in-kind services (administrative expenses, office and clinic space and overhead, allied health) provided by each. The annual budget for the pilot which supports the programme team has averaged $350,000 (Canadian Dollars).
Results from the pilot show that, in addition to making a significant difference to the health of individuals in the programme (as outlined above), the pilot actually made a major contribution to reducing healthcare costs by almost $1 million (Canadian dollars) each year, compared to annual costs of $0.35 million (Canadian dollars). This has amounted to total savings over three years of approximately $1.65 million (Canadian dollars).
Specifically, the cost reductions to the overall health system have included:
- decreases in number of in-patient days, equating to $900K in annual savings;
- decreases in emergency room visits, resulting in $7K annual savings;
- offset by increases in clinical visits in year one resulting in additional $13K costs and then a decreased trend in year two, resulting in the equivalent savings.
Learning points
Our programme has made the transition and is an example of the ‘ideal reformed system’ defined in the report of the Commission on the Reform of Ontario’s Public Services, chaired by Don Drummond on behalf of the Ontario provincial government.
The partnership is governed by a Steering Committee consisting of the CEOs of all its component organisations, as well as family and physician representatives. The partnership is supported by an Advisory Committee and Programme Team. Annual renewal of Partnership Agreements keeps key issues to the forefront and provides an opportunity for each partner to report their proposed financial and in-kind services for the upcoming year. All members of the partnership exhibit a willingness to collaborate in order better and more quickly to coordinate health care services for children and young people with complex conditions.
This programme is a model that can be replicated in other communities or settings with the following characteristics:
- Patient-centric and family-centred care.
- Driven by co-ordination and navigation of services across providers (hospital, community, education) by inter-professional Patient Focused Teams.
- Focused on complex chronic care of the small population of children and young people with technology- dependent and medically complex cases, which use the most resources.
- Data collection, sharing and comparison between all providers.
- Dedicated to reduced healthcare spending, by demonstrating rigorously the scope for diverting care out of hospital and into the community.
- Quality assurance and supervision of the impact of the model of care on the system.
It is anticipated that the model may be generalised to other groups of children and young people with high use of health care, including all children with medically complex cases and ultimately all children with complex cases of any kind, who would benefit from similar models and tools (e.g. children and young people with mental health issues).
The partnership additionally has the capability to provide tools and resources and assume a lead role in successful transition of young people to the adult hospital system.
Further information
Champlain Complex Care Program information: http://www.cheo.on.ca/en/Champlain-complex-care
The Children’s Hospital of Eastern Ontario: http://www.cheo.on.ca/
Main Contact
Shaundra Ridha
Director, Corporate Patient Services
CHEO
Email: sridha@cheo.on.ca
Dr. Nathalie Major-Cook, MD, FRCPC
Consulting Pediatric-Medical Director
Email: nmajor@cheo.on.ca