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This report is the first comprehensive examination of traumatic brain injury (TBI) care across the publicly funded care continuum and introduces the inaugural Ontario TBI Report Card. We present trends in TBI care across the province, by age group, sex and regions based on the most recent data (2013/14 to 2017/18) available at the time of writing this report.

The incidence of TBI increased from 2013/14 to 2017/18, with highest incidences observed in more rural areas including the North Simcoe Muskoka, North East and North West LHINs with 2017/18 rates of 3.42, 3.40 and 3.38, respectively. Additionally, there is considerable mortality within 30 days among individuals admitted to the hospital with TBI (13.32% in 2017/18). The mortality rate for TBI is higher than the most recent figures reported for stroke (10.5% in 2017/18) [13].

While these increasing trends are concerning, they may be attributable to greater awareness and recognition of TBIs, particularly concussion, by healthcare providers [9]. Additionally, more northern and rural LHINs tended to be ranked in the bottom two LHINs on a higher number of TBI indicators than central and urban LHINs. Combined with higher incidence of TBI, this suggests that northern regions are caring for more individuals with TBI but with fewer resources overall. This indicates a mismatch between the supply and demand of human and physical resources needed by those with TBI, thus negatively impacting health equity.

As stated previously, the TBI cohort in this report was selected with the intention of showing a comprehensive picture of TBI in Ontario, which includes those diagnosed with moderate or severe TBI as well as concussions resulting a hospital admission or emergency department visit. Notably, this report does not capture concussions diagnosed by physicians in community settings. While recently published studies indicate that most concussions (79.2%) in Ontario are diagnosed in an emergency department [9], this proportion is declining as concussions are increasingly diagnosed by general practitioners in community settings [9,26]. Future iterations of this report card will aim to delineate these cohorts and evaluate them separately.

According to the results of this report, approximately 25% of the total length of stay (LOS) days for patients with TBI in Ontario were considered alternate level of care (ALC) days in 2017/18. While this is lower than the percentages reported for stroke (31.1% in 2017/18) [13], it demonstrates that the system needs realignment. This may be particularly important for older patients (65+ years) with TBI, who have higher proportions of ALC days (30%). According to the Canadian Institute for Health Information (CIHI), the average hospital stay in Ontario costs $5,640 [27], though for seniors with TBI, these costs may be much higher. For example, the average per diem cost of a hospital bed for seniors is $840 [28]. Using the total LOS days from 2017/18, the estimated hospitals costs for seniors could be up to $8,400 (10 days). Reducing the proportion of ALC days would not only translate to healthcare cost savings but could also improve the patient outcomes by directing them to appropriate rehabilitative care more quickly. As another example, the average Home and Community Care (formerly Community Care Access Center, CCAC)

cost per person in Ontario is $3,400 per year, if ALC days are reduced by four days per person, these savings would cover the cost of their Home and Community Care. As individuals with a TBI spend more time receiving community care than receiving care from any other level in the care continuum, redistributing ALC savings to community care provision is more efficient and cost-effective given demand in the current care continuum.

Less than 20% of patients with TBI are admitted to inpatient rehabilitation following acute care. Given the high rates of TBI in rural areas with non- specialized facilities, clinicians in these regions need access to brain injury focused clinical support resources. This will improve the specialization of care in repatriated and non- specialized institutions to improve the efficacy of the TBI care individuals receive, ultimately reducing readmission and length of stay. Notably, we do not know the proportion of patients who are discharged to ambulatory rehabilitative services other than homecare-funded rehabilitation. To obtain a complete understanding of the TBI treatment and rehabilitation landscape in Ontario, changes to existing data collection practices are required by both community-based and third-party care providers.

TBI is often perceived as a single event that people recover from after treatment and a brief period of rehabilitation. However, given the life-long and irreversible implications of TBI, it is more accurate to treat TBI as a complex, chronic disease process that not only requires specialized rehabilitation but also long-term monitoring and care [29]. From 2013/14 to 2017/18, TBI patients in Ontario have consistently received four homecare therapy visits after discharge from inpatient acute care or inpatient rehabilitation, and this is considerably less than the number received by Ontarians who have had a stroke (8.4 visits in 2017/18) [13]. Individuals with chronic medical conditions, such as diabetes, can have four homecare therapy visits in a month [30], whereas individuals with TBI received four homecare therapy visits in six months. Considering that the homecare therapy visits in this report grouped together the visits for physiotherapy, occupational therapy, speech- language pathology, and social work, number of mandated rehabilitation therapy visits within the first 180 days should be increased to improve readmission rate, health outcomes, and caregiver burden for those with TBI.

Given the diverse injuries and rehabilitative needs of TBI patients (e.g., physical, cognitive, behavioural), it is challenging to identify clear benchmarks for the percentage of patients who should receive rehabilitation, the optimal length of stay in institutional care as well as the number and type of homecare services needed. That said, the findings of this report highlight the need for a continued effort towards quality improvement of and equitable access to TBI care.

It is also worth noting that in many cases a patient’s clinical diagnosis determines their access to care services. For example, some community-based rehabilitation organizations are only able to serve individuals diagnosed with moderate to severe brain injuries thus making those with prolonged complex symptoms after concussion ineligible. This may mean that these individuals rely more heavily on their family physician, who is likely to not have specialized knowledge in brain injury and not be able to effectively manage brain injury patients alone.

As of 2017/18, the majority of TBI patients did have a follow-up appointment with a GP/FP within 30 day of discharge (75%); however, given the critical role GP/FPs play in the care continuum and as gate keepers to other healthcare services, continued efforts to ensure that all patients follow-up with a GP/FP after TBI are necessary.

From a rehabilitation perspective, the cumulative findings of this report confirm the large heterogeneity among individuals with TBI, which presents challenges to the interpretation of the data. Future iterations of the Report Card will strive to address this by stratifying the data by TBI severity and type of rehabilitation (general vs. specialized). In addition, ongoing reports will profile specific intersectional populations and elaborate more on how their specific TBI rehabilitation needs may differ from that of the average individual. Specific populations for consideration are:

Seniors
Victims of intimate partner violence Youth within the criminal justice system Caregivers and caregiving burden Children (<16 years)
Indigenous populations
Individuals with comorbid diagnoses

Policy Implications and Formal Recommendations
The findings of this report have key system implications for investing in the efficiency of the TBI care continuum, identifying gaps between inpatient, outpatient and community care, and align directly with the Ministry of Health current mandates. These include striving to “end hallway health care and provide those living at home with additional supports and services”, specifically to those needing

long-term care, and to “monitor and report on the performance of the health care system and the health of Ontarians” [29]. Ontarians’ expectations are increasing with respect to access to timely patient-centered care [15]. This, combined with the rising cost of healthcare, presents a dilemma on how health systems should respond. As such, ONF has assembled this report to provide evidence on the TBI landscape and support policy makers and health system managers in determining areas for increased system efficiency and improved patient outcomes.

Individuals with financial, organizational, and/or legislative authority should identify areas within their scope, which are responsive to their specific policy tools and construct system strategies in response to the LHIN performance data presented. Although a reduction in funding is often used to attempt to increase efficiency, it is rarely effective without corresponding organizational and institutional strategies and can often end up costing more [30]. As such specific recommendations have been made to sustainably reduce waste and duplication within the TBI care pathway and, in theory, improve care services without increasing costs.

The following system-level specific recommendations are made to help address improvements in health outcomes and return on investment in public health as it relates to TBI. Recommendations are complemented by evaluation tools, projected outcomes, and appropriate stakeholder participants.