Abstract
Study Design
Health economic model.
Objectives
Significant work has been done to estimate the cost of spinal cord injury (SCI) from a health system perspective. Most of this work, however, does not establish the true cost to the individual living with SCI. This study aimed to develop a cost calculator reflecting both initial health care costs as well as lifetime costs with direct input from people living with SCI.
Methods
Costs were seperated into initial costs and lifetime costs. For initial costs, estimates were obtained from Canadian SCI health care data and the literature, and were then adjusted for inflation to 2024. For lifetime costs, input from individuals living with SCI and clinical input were collected. Initial and lifetime costs were integrated into a novel, user-friendly cost calculator.
Results
The SCI Cost Calculator provides an estimated lifetime SCI cost ranging from $1.9 M (older person living with incomplete SCI) to over $10 M 2024 Canadian dollars (younger person living with complete SCI) which is substantially higher than existing estimates. Initial costs can be as little as 3% of the lifetime cost for younger people or as high as 24% of the lifetime cost for older individuals.
Conclusion
Current cost estimates greatly understate the cost of living with SCI. To understand the support needed for persons living with SCI, an economic model that accurately reflects the costs of living with SCI is critical. Future work includes engaging the wider SCI community to enhance accuracy and validity of the cost domains identified.
Keywords: cost, spinal cord injury, calculator, individual cost, lifetime cost, healthcare cost, lived experience
Introduction
A spinal cord injury (SCI) impairs a person’s motor, sensory and autonomic body functions. Depending on the level of injury, individuals may experience difficulty with breathing, temperature control, hand function, ambulation, and control of their bowel, bladder, and sexual function as well as spasticity and pain. 1 Given the extensive impact on body systems and functions, SCI carries substantial costs for both individuals and society. Extensive research has been conducted to estimate the health care costs and the indirect costs associated with SCI.2,3 This is important as these injuries often occur at a young age, requiring significant lifetime support, depending on the level and severity of the injury.3-5 In some cases, the issue of responsibility and compensation may be prominent and the need for an estimate of the costs due to the injury can inform decision-making regarding future costs of care.
Despite previous work on the cost of SCI, two common concerns persist. First, there is significant variability in the lifetime costs of SCI depending primarily on age at injury and on the type of injury, but studies typically focus on the “average” lifetime cost of SCI. 2 While this is useful in determining the overall cost for the health care system, it may not fully capture the diverse lived experiences of each individual living with SCI. Aditionnally, decision makers may struggle with policy and funding decisions due to the lack of specificity. Clearly, lifetime costs will differ widely for someone sustaining a SCI at 20 years of age versus at 55 years of age. Similarly, the lifetime costs will be very different for individuals with complete tetraplegia versus someone with incomplete paraplegia. Chan et al 2 in estimating the lifetime health care cost of SCI in Ontario, stratified individuals into five age groups with one average cost for each group at time of injury. Krueger et al 3 used the case of an injury at 35 years of age in the initial estimation of the total economic cost of SCI. In subsequent work Krueger 4 stratified individuals by sex and type of injury based on whether they were “under 65” or “65 and over” at the time of injury but utilized the average age within each of the two age groups in their calculations of lifetime cost. As a result, the estimate for the average lifetime cost for a female under 65 with complete paraplegia refers to an average age at injury of 37, which is unlikely to reflect the cost for a 64-year-old female with the same injury.
Second, the costs associated with daily living are typically either deficient or underestimated. Considerable research has been done to characterize the “extra costs” of disability.6-8 This work, however, covers a broad spectrum as it concerns people living with either cognitive or physical disabilities. Research on the cost of SCI often either excludes or briefly addresses the “extra costs” associated with daily life. Chan et al 2 limited their investigation to direct health care costs such as hospitalization, inpatient rehabilitation, drugs, physician visits, and diagnostic tests. Malekzadeh et al, 9 in their systematic review, limited their focus to direct health care costs, as did Munce et al. 10 Others included costs of daily living as they adopted a societal perspective in their estimation of costs, but the cost of daily living was limited to capital spending in the form of home adaptations, vehicle modifications and adaptive equipment. 3 Still, one common conclusion from work on the extra costs of disability is that “the evidence points toward individuals with disability having sizeable extra costs”. 8
To address these two concerns – specific costing by age and type of injury, as well as the “extra costs” of daily life – this project aimed to develop a calculator to estimate SCI costs with 3 key objectives. First, the calculator should be user-friendly, not requiring any technical expertise. Second, it should provide a customized estimate specific to the sex of the person, the age at injury and the type of injury. Third, it should account for all the costs of daily living imposed by the injury (i.e., costs that are incurred because of the injury). The overarching aim was to develop a prototype for a SCI Cost Calculator informed by people living with SCI that could be used in research, policy making, funding and individual planning, with the intention of refinement over time.
Methods
Overview of Costing and Ethical Approval
We started by dividing costs into two broad categories: the initial costs, which occur right after the injury, and the lifetime costs, which are all the costs after the initial costs. Additionally, we incorporated lost productivity as it is an important facet of indirect costs in most economic studies and further included an estimate of loss of quality adjusted life years (QALYs). To stratify individuals by injury type we used common categories of injury: incomplete paraplegia, complete paraplegia, incomplete tetraplegia, and complete tetraplegia. Ethical review and approval of the studies that analyzed the economic costs using administrative data for traumatic SCI were completed by the University of British Columbia Research Ethics Board (H15-00471 and H22-02696) as well as the hospital ethics review boards. Ethical approval and informed consent were not obtained for this project to create the SCI Cost Calculator as it uses the outputs from the studies that received ethical approval as described above, reports from publicly available data and the input from members of the Praxis Spinal Cord Institute (also referred to as Praxis). 11
Initial Costs
Initial costs include the acute care immediately following the SCI and the initial inpatient rehabilitation.12-14 For these costs, we used the estimates from Krueger, 4 based on a retrospective analysis of individuals with traumatic SCI in British Columbia (BC) from 2005 to 2016, and in Canada from 2011 to 2016 for acute care and from 2005 to 2016 for rehabilitation. Krueger 4 provides two estimates of acute care and initial inpatient rehabilitation cost per injury type and sex, one for an individual injured before age 65 and one for those injured at age 65 or older. In using Krueger’s4 estimates, we accepted the assumption that the acute care and initial rehabilitation costs are consistent for every individual under 65 at time of injury and for those 65 and over. Krueger’s 4 acute care cost estimates are based on average length of stay (ALOS) and average resource intensity weight (RIW) using the BC standard hospital stay cost. For the initial inpatient rehabilitation, Krueger 4 used an estimated cost per day of $1295 (2019 Canadian dollars) drawn from a study from Ontario, Canada, and multiplied that cost by the ALOS in rehabilitation and by the proportion of cases that went to initial rehabilitation. 15 The Krueger 4 estimates are in 2019 Canadian dollars and were brought to 2024 Canadian dollars using the Bank of Canada inflation calculator. 16
Lifetime Costs
Lifetime costs were calculated as the sum of annual costs, after the initial costs, continuing through to the end of life. A critical determinant of lifetime costs is the life expectancy with an SCI. To estimate life expectancy with an SCI, we used Statistics Canada data on life expectancy in Canada for the general population, by sex and age. 17 We then applied a ratio of the life expectancy of people living with SCI compared to the general population, by type of injury and age at time of injury, reported by Krueger. 4
In Canada, health care provided in hospital is typically publicly funded along with physician services in and out of hospital, whereas most rehabilitation care outside of hospital is covered by private insurance or by patients themselves. Lifetime costs were divided into two basic components: publicly funded health care costs and all other costs.
Data for all other costs and the attendant care costs included in the publicly funded health care costs came from the Persons with Lived Experience (PLEX) and clinical teams at the Praxis Spinal Cord Institute. PLEX includes people living with SCI, their family and friends, care attendants as well as PLEX-focused community organizations and advocacy groups. Praxis follows an integrated knowledge translation approach, engaging PLEX in decision-making, setting priorities, conducting research, and translating knowledge.
Members of the Praxis PLEX and clinical teams were engaged in a structured consultation process. This diverse group of partners included: six people living with SCI (five males and one female with different injury severities and levels) and one family member of a person living with SCI, four clinicians (two physiotherapists, an occupational therapist and a registered nurse), and two health economists. This group met 16 times over a six-month period between 2023 and 2024. The group identified the relevant cost domains and the items in each domain and then provided estimates for the cost for each item for a person living with SCI, by type of injury. Cost estimates were based on insurance claims, retail pricing, and both personal and professional experiences.
To account for the variability in costs, the team established upper and lower cost ranges along with average for each item, ensuring that the estimates captured the broad spectrum of expenses associated with SCI. These cost domains, values and replacement frequencies were estimated from the perspective of what an ideal individual circumstance would be; however, this may not reflect the reality of those currently living with SCI due to restrictions on their ability to access or pay for what is needed or wanted expenses. An environmental scan was conducted to inform the calculator design, and the Integrated Knowledge Translation (IKT) Guiding Principles were followed in conducting this work. 18
Publicly funded health care costs include six items: rehospitalizations, day procedures, health care providers, pharmaceuticals, institutional care, and attendant care services. For the first five items, we used the data from Krueger 4 for each of the first seven years after the SCI with the amount for year seven representing the expected costs for every subsequent year until death. For the last year of life, we used the proportion of the annual cost equal to the proportion of the full year that the person is alive. Attendant care services were estimated based on the hourly cost and the average weekly hours of care per type of injury. Some individuals may require more than 24 hours of care per day in circumstances where 24-hour care is required to be supplemented by additional care providers for specific activities such as transfers, bathing, toileting and dressing.
As was the case with initial health care costs, we assumed that the annual publicly funded health care costs do not vary by age at injury, except between those injured before 65 vs those injured at 65 or older. So, we assumed that the rehospitalization costs, for example, are the same in the year after the injury whether the injury took place at age 18 or 64. Again, annual cost estimates from Krueger 4 in 2019 Canadian dollars were brought to 2024 using the Bank of Canada inflation calculator. All annual costs were discounted at a real discount rate of 1.5%. 2
The Praxis teams divided the ‘all other costs’ into 4 domains: durable equipment, vehicle, home renovations and out-of-pocket spending. Durable equipment expenses encompass all equipment made necessary by the SCI (e.g., wheelchair, wheelchair cushion, overhead track lift, etc.) and the estimated replacement schedule. Vehicle expenses encompass all capital expenses that exceed what would normally be expected, along with vehicle modifications. For example, if an individual requires an adapted van, they are not usually permitted to have the adaptations made to a used vehicle and therefore must pay an additional cost to purchase a new vechicle. Home renovation expenses include all modifications to one’s living space, both to the interior and exterior of the property, due to SCI. Finally, out-of-pocket expenses include a range of personal expenses such as the extra cost of aquiring and preparing food, home maintenance, and travel. For each item, we used the average cost provided by the Praxis teams, by type of injury. For capital costs, we divided the cost of each item by its lifespan to get an estimated cost per year, essentially treating the annual depreciation as the yearly cost. As above, all other expenses were discounted at a real rate of 1.5%.
Lost Productivity
We also factored in lost productivity, using earnings as a proxy for productivity. The Praxis teams estimated the average percentage earnings loss for a person with SCI compared to the same person if there had been no SCI for each of the 4 types of injury. The comparison was made based on the most appropriate occupation both with and without SCI. The Praxis PLEX team identified suitable occupations in two ways depending on when an individual sustained their SCI in relation to their career trajectory. For individuals who sustained their SCI earlier in life, before entering the workforce, or early in their career, their potential career path was inferred by considering the career trajectories of their peers at the time. For individuals who sustained their SCI while established in their careers, we compared where their career path might have led if they had not been injured to what it likely became. We applied the average percentage loss of earnings by type of injury to the average employment income in Canada, by sex, from Statistics Canada.19,20 The loss of productivity estimate is the present value sum of the applicable yearly earnings losses and was only included for those with injury at under 65.
Total Overall Costs
The initial costs and lifetime costs, including lost productivity, were integrated into a costing calculator. The SCI Cost Calculator was built on the Microsoft Excel platform, with sixteen tabs for the categories of individuals living with SCI: four types of injury (incomplete and complete paraplegia; incomplete and complete tetraplegia), two sexes (male and female), and age at injury (under 65 or 65 and over), plus a summary tab. Data entry for the SCI Cost calculator was set on the summary tab where the user chooses the column representing the person of interest (male or female, type of injury and age category) and enters the age at injury. The SCI Cost Calculator provides an overall total cost estimate for that individual, over their lifetime, in present value Canadian dollars. Both a website and mobile version of the Excel costing tool were developed by the IT team at Praxis.
Quality Adjusted Life Years (QALYs)
In addition to the lifetime costs, we also incorporated an estimate of the loss of Quality Adjusted Life Years (QALYs), which is a measure of both the quality and quantity of life lived. The loss of QALYs is calculated as the sum of the years of life lost because of SCI and the disability weight for the years of life with the SCI. We used the disability weights from Krueger 4 The disability weight is the percentage of a QALY that is lost each year because of the injury., All QALY losses are discounted at 1.5%. These losses are also presented as part of the SCI Cost Calculator.
Results
SCI Cost Calculator
Supplemental Figures 1a, 1b, 1c, and 1d provide screenshots of the website and mobile version of the SCI Cost Calculator which will be freely accessible to users through the link provided on Praxis’ website: https://praxisinstitute.org.
Initial Costs
Initial costs by type of injury are presented in Table 1 in current (2024) Canadian dollars.
Table 1.
Initial Costs per Type of Injury in 2024 Canadian dollars
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | ||
|---|---|---|---|---|---|
| Acute care | Male under 65 | $56,606 | $69,006 | $42,199 | $183,903 |
| Male 65 or older | $81,884 | $99,048 | $57,288 | $281,901 | |
| Female under 65 | $44,180 | $107,768 | $53,819 | $190,156 | |
| Female 65 or older | $38,723 | $89,138 | $40,894 | $149,223 | |
| Initial rehabilitation | Male under 65 | $54,622 | $141,969 | $60,251 | $237,027 |
| Male 65 or older | $28,980 | $130,707 | $34,556 | $114,879 | |
| Female under 65 | $55,411 | $142,578 | $42,693 | $243,912 | |
| Female 65 or older | $29,226 | $46,671 | $23,215 | $55,909 | |
Lifetime Costs
The ratio of life expectancy for people living with SCI versus the general population by type of injury, sex and age at injury was included. The cost of attendant care services is a combination of the cost per hour and the number of hours per week. The cost per hour was estimated by the Praxis team at $42 per hour (combined average rate). Estimated average number of hours required of attendant care services per week by type of injury, are provided in Table 2. Tables 3 and 4 provide the estimated lifetime health care expenses based on the data using the example of age at injury of 25 and 65, by sex and type of injury.
Table 2.
Weekly Hours of Attendant Care Services by Type of Injury
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | |
|---|---|---|---|---|
| Average | 5 | 5 | 70 | 70 |
| Range | 2-10 | 2-10 | 14-168 | 14-168 |
aWeekly hours may exceed 24 hours a day as some individuals require more than 1 attendant at a time.
Table 3.
Lifetime Publicly Funded Health Care Costs for an Injury at Age 25, by Type of Injury, in 2024 Canadian dollars
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | ||
|---|---|---|---|---|---|
| Rehospitalizations | Male | $109,039 | $337,780 | $169,512 | $395,135 |
| Female | $135,698 | $160,950 | $65,633 | $230,172 | |
| Day procedures | Male | $5096 | $10,251 | $5153 | $8157 |
| Female | $5363 | $11,710 | $5820 | $12,707 | |
| Health care providers | Male | $59,010 | $85,707 | $46,936 | $76,194 |
| Female | $60,715 | $125,735 | $41,857 | $64,585 | |
| Pharmaceuticals | Male | $52,880 | $30,361 | $37,376 | $55,617 |
| Female | $62,938 | $94,068 | $9493 | $58,628 | |
| Institutional care | Male | $232,683 | $311,422 | $0 a | $202,947 |
| Female | $92,277 | $714,541 | $122,202 | $0 a | |
| Attendant care services | Male | $371,395 | $342,142 | $4,220,695 | $3,815,203 |
| Female | $390,313 | $361,958 | $4,522,749 | $4,122,473 |
aAmongst all SCI cases in BC between 2005 and 2016, for which data was available in the government administrative database, no males under 65 with incomplete tetraplegia and no females under 65 with complete tetraplegia were admitted to long term care within a year of hospital discharge. Since these costs are based on available data, there are variations in costs by injury type and for males and females.
Table 4.
Lifetime Publicly Funded Health Care Costs for an Injury at Age 65, by Type of Injury, in 2024 Canadian dollars
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | ||
|---|---|---|---|---|---|
| Rehospitalizations | Male | $50,512 | $181,844 | $69,014 | $120,646 |
| Female | $33,741 | $107,405 | $36,025 | $109,526 | |
| Day procedures | Male | $2271 | $1821 | $1640 | $1053 |
| Female | $1581 | $4316 | $1358 | $2746 | |
| Health care providers | Male | $27,304 | $22,121 | $16,188 | $12,356 |
| Female | $12,558 | $51,386 | $14,375 | $19,812 | |
| Pharmaceuticals | Male | $15,477 | $5718 | $7815 | $0 a |
| Female | $7407 | $38,027 | $10,513 | $13,665 | |
| Institutional care | Male | $347,311 | $278,177 | $194,002 | $146,957 |
| Female | $488,423 | $401,359 | $285,288 | $220,297 | |
| Attendant care services | Male | $151,448 | $121,302 | $1,184,349 | $897,150 |
| Female | $169,338 | $139,152 | $1,384,742 | $1,069,286 |
aThere were 9 cases of males over 65 with complete tetraplegia in BC between 2005 and 2010 and zero PharmaNet expenditures for any of them for at leat 6 years after the injury (2005-2016).
The cost of each item included in durable equipment, by type of injury was estimated and a range was included for each SCI injury group (e.g., wheelchair, wheelchair cushion, overhead track lift, etc.). The average increased capital costs for vehicles, and vehicle modification, by type of injury range from $20,000 to $30,000 and $3,000 to $50,000 respectively. The average capital cost for home renovation is estimated at $100,000, for all types of injury, with a timespan of 5 years. This timespan accounts for replacements and moving. Out of pocket expenses for a range of personal expenses such as the extra cost of aquiring and preparing food, home maintenance, and travel were included and the average cost for each injury type was inputted. Finally, Table 5 provides estimates of percentage of earning losses due to SCI. Table 6 displays the earning losses, for a male injured at age 25.
Table 5.
Estimates of Percentage of Earning Losses due to SCI
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | |
|---|---|---|---|---|
| Loss (%) | 33 | 40 | 45 | 75 |
Table 6.
Estimates of Earning Losses due to SCI for a Male Injured at Age 25 in 2024 Canadian dollars
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | |
|---|---|---|---|---|
| Loss ($) | 691,599 | 838,302 | 1,193,699 | 2,006,184 |
Total Overall Cost
The sum of the initial costs, the lifetime publicly funded health care costs, the other costs and the productivity loss provides an estimate of the total overall cost of an SCI. Table 7 provides an example of the lifetime total cost estimate for a 25-year-old, ranging from just under $5 M to $10.2 M depending on sex and type of injury.
Table 7.
Total Lifetime Costs of an Individual Living With SCI Age 25 at Time of Injury in 2024 Canadian dollars
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | |
|---|---|---|---|---|
| Male | $4,900,558 | $5,178,374 | $9,380,074 | $10,205,706 |
| Female | $4,802,179 | $5,536,987 | $9,494,057 | $9,771,251 |
QALY Losses
In addition to lifetime costs, the SCI Cost Calculator provides an estimate of QALYs loss. Using these estimates, the present value QALY losses, for a male 25-year-old at time of injury can be seen in Table 8.
Table 8.
Estimated Values of QALY Losses, for a Male Injured at Age 25
| Incomplete paraplegia | Complete paraplegia | Incomplete tetraplegia | Complete tetraplegia | |
|---|---|---|---|---|
| QALY | 5.34 | 15.28 | 16.03 | 27.08 |
Discussion
Given SCI is a chronic condition, it is important to consider costs over the individual’s entire lifetime. Lifetime costs start with the initial acute care and rehabilitation, followed by ongoing publicly funded health care expenses and ‘other costs’. Our work, which is personalized to individuals’ injury characteristics, estimated lifetime costs from $1.9 M (older person living with incomplete SCI) to over $10 M (younger person living with complete SCI), which is substantially higher than existing estimates.
Previous research on the cost of SCI has considered the issue from an economic and societal perspective. Krueger et al. 3 and Malekzadeh et al. 9 address explicitly the economic costs attributable to SCI. These estimates of economic costs are useful for health care system planning purposes, but at the individual level, such estimates are of limited relevance unless the person living with SCI happens to sustain the injury at the average age of injury in their jurisdiction. Additionally, economic cost estimates typically focus on covered health care costs and are limited in their inclusion of any other costs. Our estimates attempt to address these concerns to provide a more complete picture of the lifetime costs of SCI.
To estimate the true costs, it is necessary to account for all aspects of costs from initial care, to lifetime additional costs, and include lost productivity costs. The costs of initial care were divided into acute care and initial rehabilitation. The cost was further broken down by sex, age, and level and completeness of injury. The cost of acute care ranged from a minimum of $38,723 for females 65 or older with incomplete paraplegia to a maximum of $281,901 for males 65 or older with complete tetraplegia. A 2019 study by Chan et al 2 reported the cost of acute SCI inpatient hospitalization in Canada for the first 60 days after injury as $17,114 regardless of injury type which is lower than the costs measured in this study. A 2018 study by Mitchell et al 21 reported that the mean cost of index hospitalization for traumatic spinal injuries (with or without spinal cord injury) in Australia was $31,187 AUD. This result was comparable to our lowest category cost of acute care of $38,723 but significantly lower than the maximum category of $281,901.
Initial rehabilitation costs ranged from $23,215 (females 65 and older with incomplete tetraplegia) to a maximum of $243,912 (females under 65 with complete tetraplegia). Chan et al 2 reported an average inpatient rehabilitation cost as $16,144 for the first 360 days post injury. The sample included individuals (54%) who did not require inpatient rehabilitation. These estimates are significantly lower than the costs found in our research. However, Kiekens et al 22 reported a rehabilitation average cost of $45,770 and $70,965 (32,050 and 48,707 Euros in 2011). When adjusted to 2024 dollars these estimates are more in line with our Canadian initial rehabilitation estimations.
Using the SCI Cost Calculator, the estimated non-health care costs sustained by an individual at age 25 at time of injury are between $3 M and $3.9 M. The difference between our estimates and previous work is substantial. For example, for a male with complete paraplegia with an injury at age 37, we have a total for lifetime ‘other costs’ of $2.4 M while previous work estimated this to be only $217,271. Chan et al 2 reported that the total health care costs of people living with SCI was almost 7 and a half times higher than the non-SCI population. Cao et al 23 estimated lifetime costs for SCI injury at age 25, varying by location and severity of injury, from $2.8 M (incomplete or complete paraplegia) to $5.4 M (tetraplegia incomplete or complete) US dollars. When adjusted for inflation and converted to Canadian dollars, these costs are comparable to our estimates.
While the costs of acute care and rehabilitation are significant, there are then follow-up publicly funded health care costs as well as ‘other costs’ which increase the lifetime cost of SCI. The ‘other costs’ were identified and estimated through consultation with the Praxis teams and are a significant contribution of the SCI Cost Calculator. We applied the IKT Guiding Principles 18 to accurately capture the input of the Praxis teams on ‘other costs’. The IKT Guiding Principles ensure meaningful engagement by deploying the right research users at the right time throughout the research process. 18 By engaging the Praxis teams early and throughout the research process, we were able to obtain meaningful and relevant information on the costs of living with a SCI.
The Praxis teams identified several costs often overlooked in other studies. For example, damage to property, equipment, and vehicles because of the negligence of others was identified as an exceptional cost that extends past general wear and tear given the reliance on others due to the SCI. Additionally, the PLEX teams highlighted the substantial costs associated with recreational local and international travel. Travelling incurs a multitude of additional costs for persons living with SCI, whether done for personal recreation or, as is often necessary, to access specialized care providers required to manage their health. For example, suitable accessible accommodations are generally limited to newer and higher-end hotels that often charge higher nightly rates. Other overlooked travel costs include things such as lift rentals, accessible transport, added premiums to access leisure activities, and increased costs to visit accessible restaurants, which tend to be more expensive. The cost of flying is also increased since individuals living with SCI often need to travel with one or more care providers, are typically last to deplane, and must wait for their wheelchair to be brought to the exit of the plane, adding time to make connections.
The hidden costs of disability are becoming more recognized by experts and policy makers.24,25 In a recent review comparing financial well-being between households with and without disability, the US Federal Reserve found that over 40% of the difference was due to hidden costs. 24 Research by the Council of Canadians with Disabilities collected data from 50 people with lived experience in Quebec to review the extra costs associated with living with a disability. 25 They distinguished cost categories similar to our work, including housing/rental costs, extra medications fees, transportation costs, loss of income, equipment losses/breakage costs, and paramedical care. Although other research has tried to capture the hidden costs of disability, very few studies focus on SCI or include people with lived experience. For instance, Currie et al., 26 identified 9 cost categories for rare diseases: inpatient, outpatient, community, health care products/goods, productivity/education, travel/accommodation, government benefits, family impacts, and other. They used an expert panel to review and refine their framework but did not include PLEX.
The main limitation of our work is that data in our SCI Cost Calculator came from one country and a relatively small sample of individuals with SCI. As a result, it may not be applicable in countries with significantly different costs of healthcare and daily living. However, the SCI Cost Calculator could be adapted to other healthcare systems by populating the described cost categories using country-specific cost details. The publicly funded health care costs are the actual costs incurred by people with a SCI between 2005 and 2016 in British Columbia, Canada. Over that period, there was an average of approximately 150 traumatic SCIs per year discharged from hospital. Consequently, the number of cases on which the costs are estimated can be very limited for some types of injuries. For example, the number of females 65 and older that sustained a SCI leading to complete paraplegia was less than 5, in total, between 2011 and 2016. The data for the ‘other costs’ came from a small group of people with lived experience associated with Praxis. This limitation was recognized early on in our work, and it was agreed that there is a need for validation and refinement based on the experiences of a broader set of individuals. However, the lived experience needs to remain as the main source of data for ‘other costs’. Broadening the source of information for those costs will improve the validity of the SCI Cost Calculator, and lead to a concurrent recognition of their importance. Further input from individuals with lived experience should also address the potential impact of age at time of injury on the annual costs. As it is now, age only affects the lifetime costs through its impact on life expectancy with the injury, i.e., the yearly costs for each item does not vary by age at injury.
In conclusion, the SCI Cost Calculator draws on the experience of people living with SCI to reflect the full impact of a SCI on a person’s life. Our SCI Cost Calculator produced a range of lifetime cost estimates for an individual injured at age 25 from $4.8 M (incomplete paraplegia) to over $10 M (complete tetraplegia). As far as we know, this is the first costing tool for SCI accounting for both direct and indirect health care costs with a lifetime horizon. This tool has policy implications as it can allow the estimation, for a given individual, of the costs of an SCI that are not covered by health care insurance or other compensation. It also provides an explicit estimate of the additional costs imposed on daily activities. Identifying these types of funding shortfalls is one of the benefits of this work, along with providing detailed information to policy makers on the actual cost of SCI. Further work is required to validate the data used in the SCI Cost Calculator and to explore opportunities for use both within and outside Canada.
Supplemental Material
Supplemental material for Developing a Lifetime Cost Calculator for Spinal Cord Injury: The SCI Cost Calculator by Craig Mitton, Francois Dionne, Sydney Heschuk, John Chernesky, Julia Ross, Shannon Rockall, James Hektner, Richard Peter, Spring Hawes, Elaine Chan, William Chu Kwan, Brian K. Kwon, Vanessa K. Noonan in Global Spine Journal
Acknowledgements
We thank the members of the Praxis Research and Data teams as well as the British Columbia Trauma Registry team for their assistance in data provisioning and support. We would also like to thank Sam Douglas, Heather Scott, Barry Munro and Chris Marks for their contributions.
Author Contributions: Craig Mitton: Conceptualization (equal), investigation (equal), methodology (equal), validation (equal), writing – original draft (equal), writing – review & editing (equal).
Francois Dionne: Conceptualization (equal), investigation (equal), methodology (equal), validation (equal), formal analysis (lead), writing – original draft (equal), writing – review & editing (equal).
Sydney Heschuk: Investigation (equal), methodology (equal), validation (equal), writing - original draft (equal), writing – review & editing (equal).
John Chernesky: Investigation (equal), methodology (equal), validation (equal), writing - original draft (equal), writing – review & editing (equal)
Julia Ross: Writing - original draft (equal), writing – review & editing (equal).
Shannon Rockall: Investigation (equal), validation (equal), writing – review & editing (equal).
James Hektner: Investigation (equal), Validation (equal), writing – review & editing (equal).
Richard Peter: Investigation (equal), Validation (equal), writing – review & editing (equal).
Spring Hawes: Investigation (equal), Validation (equal), writing – review & editing (equal).
Elaine Chan: Validation (equal), writing – review & editing (equal)
William Chu Kwan: Methodology (equal), Investigation (equal), Validation (equal), writing – review & editing (equal).
Brian K. Kwon: Methodology (equal), Validation (equal), writing – review & editing (equal).
Vanessa K. Noonan: Conceptualization (equal), supervision (equal), Funding acquisition (lead), Methodology (equal), writing - original draft (equal), writing – review & editing (equal).
Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is supported by funding from the Praxis Spinal Cord Institute through the Government of Canada, the Province of British Columbia and Genome BC.
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Supplemental Material: Supplemental material for this article is available online.
ORCID iDs
Julia Ross https://orcid.org/0009-0007-9002-8478
Elaine Chan https://orcid.org/0009-0001-1947-0470
William Chu Kwan https://orcid.org/0000-0001-6803-0669
Vanessa K. Noonan https://orcid.org/0000-0003-3226-9218
Ethical Approval
Ethical review and approval of the studies that analyzed the economic costs using administrative data for traumatic SCI were completed by the University of British Columbia Research Ethics Board (H15-00471 and H22-02696) as well as the hospital ethics review boards. Ethical approval and informed consent were not obtained for this project to create the SCI Cost Calculator as it uses the outputs from the studies that received ethical approval, publicly available data and the input from members of the Praxis Spinal Cord Institute.
Data Availability Statement
Queries on the data and the availability can be directed to the corresponding author. Parts of this study are based on data and information provided by the Canadian Institute for Health Information. However, the analyses, conclusions, opinions and statements expressed herein are those of the authors and not those of the Canadian Institute for Health Information. The data that supports the findings of this study was obtained upon request from Population Data BC. Access to data provided by the Data Stewards is subject to approval but can be requested for research projects through the Data Stewards or their designated service providers. The following data sets were used in this study: (Consolidation file (includes demographics, registry, and census geodata), Hospital Separations, Medical Services Plan (MSP), RHSCIR, BCTR, Vertebase/QISpine). You can find further information regarding these provincial data sets by visiting the PopData project webpage at: (https://my.popdata.bc.ca/project_listings/15-119/collection_approval_dates). For more information on RHSCIR, visit the Praxis website (https://praxisinstitute.org). Inferences, opinions, and conclusions drawn in this publication are those of the authors, and do not reflect the opinions or policies of the Data Stewards.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Supplemental material for Developing a Lifetime Cost Calculator for Spinal Cord Injury: The SCI Cost Calculator by Craig Mitton, Francois Dionne, Sydney Heschuk, John Chernesky, Julia Ross, Shannon Rockall, James Hektner, Richard Peter, Spring Hawes, Elaine Chan, William Chu Kwan, Brian K. Kwon, Vanessa K. Noonan in Global Spine Journal
Data Availability Statement
Queries on the data and the availability can be directed to the corresponding author. Parts of this study are based on data and information provided by the Canadian Institute for Health Information. However, the analyses, conclusions, opinions and statements expressed herein are those of the authors and not those of the Canadian Institute for Health Information. The data that supports the findings of this study was obtained upon request from Population Data BC. Access to data provided by the Data Stewards is subject to approval but can be requested for research projects through the Data Stewards or their designated service providers. The following data sets were used in this study: (Consolidation file (includes demographics, registry, and census geodata), Hospital Separations, Medical Services Plan (MSP), RHSCIR, BCTR, Vertebase/QISpine). You can find further information regarding these provincial data sets by visiting the PopData project webpage at: (https://my.popdata.bc.ca/project_listings/15-119/collection_approval_dates). For more information on RHSCIR, visit the Praxis website (https://praxisinstitute.org). Inferences, opinions, and conclusions drawn in this publication are those of the authors, and do not reflect the opinions or policies of the Data Stewards.