Chapter 2: Mapping Connections: An understanding of neurological conditions in Canada – Health services for neurological conditions

2. Health Services for Neurological Conditions

Neurological conditions are associated with a broad spectrum of health impacts that vary both in nature and in severity (Chapter 1). A range of health services for individuals living with a neurological condition, their families, and caregivers is necessary to appropriately address these impacts. In Canada, health is a shared responsibility between federal and provincial governments, with provinces and territories in charge of the organization of their health services. Thus, a true understanding of the issues related to health services in Canada would require data collection at the provincial and territorial levels in order to develop knowledge relevant to each jurisdiction.

Several projects of the Study explored the need for, and adequacy of, health services for those with a neurological condition along the continuum of health care provision [1][2][4][6][7][8][9][10][11][16]. These projects included the perspectives of individuals living with a neurological condition, informal caregivers, health care providers, and policy makers. In this chapter, health services were investigated in terms of utilization, costs, role of informal caregivers, perceptions (of administrators, patients, and caregivers) on their adequacy, delivery of continuing care, care of children, and specific needs of Aboriginal Canadians.

2.1 Individuals with a neurological condition use a considerable amount of health care services across the continuum of care

The LINC Project [9] survey, based on a convenience sample of 754 volunteer adults living with a neurological condition in the community, found that these individuals used more universally insured health services than Canadians with other chronic health conditions (Figure 2-1).^{Footnote 25} This finding was related to specialist physician services in particular, but was also applicable to service providers that were not always accessible through public funding, such as nurses, physiotherapists, psychologists, social workers, and counsellors.

NOTES:

LINC

The Everyday Experience of Living with and Managing a Neurological Condition.

CCHS

Canadian Community Health Survey.

*

Other therapists included occupational therapists, audiologists, and speech therapists.

†

2009-2010 CCHS data; data were weighted to represent the Canadian population living in the community and were age-sex-standardized to the LINC population. Chronic conditions included asthma, arthritis, back problems, high blood pressure, chronic bronchitis/emphysema, diabetes, heart disease, cancer, ulcers, urinary incontinence, bowel disorders, mood disorders, or anxiety disorders.

‡

LINC data.

SOURCES: LINC survey (LINC Project [11]); 2009-2010 CCHS (Statistics Canada).

Up to a quarter of the population living with a neurological condition in the community accesses formal assistance. Twenty-five per cent of respondents to the LINC survey made extensive use of formal caregiving, mainly for personal care (eating, dressing, bathing, and toileting) or for house and yard work [9]. Similarly, when respondents with migraine were removed from SLNCC data,^{Footnote 26} 21.2% of Canadians living with a neurological condition reported accessing formal assistance during the previous year [16]. In Ontario, individuals with a neurological condition in registered home care programs used more health care services than did those receiving home care for other conditions [8].

The usage of various types of formal and informal assistance, as noted by the SLNCC (excluding migraine), is shown in Figure 2-2 [16]. Most often, formal assistance was used for general help with activities (51.7%) or personal care (48.6%). Although not shown, when formal assistance was used, it was used frequently, at least once a week or daily, and was used in conjunction with informal assistance [10][16].

NOTES:

Data were weighted to represent the Canadian population living with a neurological condition and were based on self- or proxy-report. The 95% confidence interval shows an estimated range of values which is likely to include the true value 19 times out of 20.

SLNCC

Survey on Living with Neurological Conditions in Canada.

*

'Type of assistance' was limited to the population receiving assistance. Categories were not mutually exclusive.

E

Interpret with caution; coefficient of variation between 16.6% and 33.3%.

F

Data were unreportable due to small sample size or high sampling variability.

SOURCE: 2011-2012 SLNCC data (Statistics Canada).

Canadians living with a neurological condition use health care services more often than those without that neurological condition. Investigators of the British Columbia (BC) Administrative Data Project [1] found that of individuals who sought health care services, those diagnosed with targeted neurological conditions had more hospital days, physician visits, prescriptions, and days in residential care compared to individuals without these neurological conditions:

• Acute hospital utilization: Per capita hospital days ranged from 2.2 days for women with multiple sclerosis to 64.7 days for men with spinal cord injury. This rate of utilization was 3.5 to 110 times higher for individuals with a specific neurological condition than for individuals without that condition in British Columbia during the fiscal year 2010/2011.^{Footnote 27,Footnote 28} The high per capita hospital days for those with brain and spinal cord injury likely reflected the length of time that individuals with these conditions spent in rehabilitation.^{Footnote 29}
• Physician services utilization: Physician visits, a reflection of the utilization of services by individuals both in the community and in acute care hospitals, were 1.4 to 5.6 times higher among individuals with a neurological condition than among those without that condition in British Columbia in 2010/2011. Individuals that presented with spinal cord injury (92.9 visits for men), traumatic brain injury (79.5 visits for women), Alzheimer’s disease and other dementias (55.1 visits for men), and brain and spinal cord tumours (53.7 visits for men) had the greatest numbers of per capita physician visits.
• Prescription medication utilization: Use of prescribed medications, expressed as per capita dispensed prescription days, was highest in British Columbia in 2010/2011 for those with parkinsonism, which included Parkinson’s disease (1,689.9 prescription days for men; 1,952.2 for women). Usage of prescribed medications was similarly high for individuals with Alzheimer’s disease and other dementias (1,732.6 for men; 1,898.4 for women), and slightly lower for those with Huntington’s disease (1,348.0 for men; 1,522.1 for women) and anterior horn cell disease, which included ALS (1,080.1 for men; 1,277.5 for women). For all neurological conditions studied by the BC Administrative Data Project [1], women had higher dispensed prescription days compared to men.
• Residential care utilization: The number of days in residential care per capita was approximately three to 200 times higher among individuals with a specific neurological condition than among those without that condition in British Columbia in 2009/2010. The number of days in residential care was highest for individuals with Huntington’s disease (231.6 per capita days for men; 248.6 for women). Per capita days of residential care were also high for those with Alzheimer’s disease and other dementias (97.1 for men; 134.3 for women), cerebral palsy (80.0 for men, 81.3 for women), and parkinsonism (50.5 for men, 76.1 for women).

The interRAI Project [8] noted that individuals with a neurological condition also used more alternate level of care (ALC) days in hospital while awaiting nursing home placement. Approximately half of identified ALC patients had Alzheimer’s disease and other dementias, while parkinsonism was the next most common neurological condition, albeit present in less than 10% of ALC patients. Responsive or challenging behaviours were present in three quarters of ALC patients with Alzheimer’s disease and other dementias.

Based on results from the LINC Project [9], children living with a neurological condition also used the health care system more frequently. Although children with a neurological condition used generalist physician services at a level similar to Canadian children overall, those with a neurological condition were more likely to have a hospital stay, contact a specialist physician, receive mental health services, or consult with a social worker or counsellor.

The mental health service needs of Canadians living with a neurological condition are significant. The impacts of neurological conditions on the mental health of affected individuals were considerable (Chapter 1), and consequently led to an increased need for supportive care, where 34.8% of Canadians with a neurological condition reported receiving formal emotional support because of their condition [16].^{Footnote 30}

In contrast to the documented use of mental health services, results from the Health Services Project [7] suggested that such needs were not always being adequately met. Based on results from an online survey completed by administrators of publicly-funded acute care hospitals, long-term care facilities, and community outpatient centres from all regions of Canada, 33% of respondents indicated that their facility did not accept patients with psychiatric diagnoses or severe behavioural disorders. Only 9% of these service providers had access to a neuropsychologist, and only 3% had access to a neuropsychiatrist.

2.2 Costs of health services for Canadians with a neurological condition are greater than for those without a neurological condition

Estimating costs of health services for Canadians with a neurological condition, relative to Canadians without these conditions, is a complex endeavour influenced by a variety of factors, which in turn may vary by jurisdiction. Certain projects of the Study [1][8][9][10] contributed new evidence on this issue, but these findings may be limited in their generalizability across Canada.

Total direct health care costs are high for Canadians living with a neurological condition. Total and per capita direct health care costs for 13 neurological conditions investigated in British Columbia for fiscal year 2010/2011 were three to 41 times higher among individuals diagnosed with any of the investigated neurological conditions compared to age-standardized data for individuals without those particular conditions (Table 2-1) [1].^{Footnote 31} The particularly high per capita costs seen for traumatic brain and spinal cord injuries were mostly associated with the hospital costs required for their treatment.

Large as these figures were, they underestimated the true costs for each condition because this project only had access to direct costs in addition to limited out-of-pocket expenses (which included prescription drugs not covered by British Columbia Pharmacare). Services provided by salaried physicians and many indirect costs (such as patient and caregiver time away from work or on long-term disability) could not be determined from the available data.

Another project also demonstrated that the costs of caring for individuals with a neurological condition in home care programs or in chronic care facilities were greater than those for individuals with other conditions [8].

Average out-of-pocket expenses are high. Sixty percent of respondents in the LINC Project [9] reported out-of-pocket costs for prescribed medications, despite the fact that 85% of the sample reported having a drug insurance plan. Nearly 20% had paid more than $1,000 in out-of-pocket expenses in the previous year. Questions about average annual out-of-pocket expenses per respondent were also part of the SLNCC,^{Footnote 32} but estimates were likely much lower than the true costs actually experienced by Canadians, since average costs do not reflect individual experiences (Table 2-2).

The British Columbia PharmaNet database provided information about the costs of medications not covered by British Columbia Pharmacare, although self-paid and third-party payments were not separable. For three neurological conditions in 2010/2011, these costs (out-of-pocket, at least in part) were more than $1,000: brain tumour - $1,095 (age-standardized comparison group without the condition - $313); multiple sclerosis - $1,270 (comparison group - $311); and parkinsonism - $1,071 (comparison group - $311) [1].

2.3 Limitations in health care services have been identified

To assess the provision of health services in Canada, the Health Services Project [7] aimed to identify needs, gaps, current policies, and best practices. This project performed a literature review of 723 articles, held structured interviews with 180 key informants from across Canada (39% health care professionals, 47% non-health care professionals, and 14% policy makers), and conducted an online survey completed by administrators in 645 of the 2,783 publically-funded health care facilities in Canada (acute care hospitals, long-term care facilities, community outpatient centres, and home care organizations).

The scoping review and key informant interviews documented a lack of knowledge or awareness regarding neurological conditions among service providers and a limited availability of much needed services for Canadians living with a neurological condition, particularly for those living in rural areas.

More health services are available for common neurological conditions than for rare conditions. A high proportion of care providers offered services for individuals with stroke (71%), Parkinson’s disease (65%), Alzheimer’s disease (65%), traumatic brain injury (59%), and multiple sclerosis (57%). However, only a small proportion of care providers reported services for individuals with less common conditions such as dystonia (28%), Tourette syndrome (17%), or Rett syndrome (13%).

The availability of certain support services is limited. There was a lack of information on, and services for, education or return to school, employment, family and caregiver support, housing, and transportation. Informed by their interviews with service providers and policy makers, the Health Services Project [7] team developed a ‘chronic care model for neurological conditions’. This model provided the vision for a comprehensive system change, aimed at improving the quality of life for individuals living with these conditions and increasing collaboration between the health system, the community, and the socioeconomic and political sectors.

Access to services for individuals with a neurological condition is sometimes limited by exclusion criteria. Although data could not be differentiated by type of facility, most service providers reported exclusion criteria for accessing their services. This may have been appropriate if the service provider was not equipped to address the needs of the patient. In addition to 33% of reporting facilities having exclusion criteria for psychiatric diagnoses, severe behavioural disorders, or for substance abuse or substance dependence, a further 32% of reporting facilities reported exclusions for medical instability, degenerative medical conditions, or the presence of comorbidities, while 21% reported exclusions on the basis of age. Only 28% of service providers reported no exclusion criteria. It was noted that the implementation of these criteria may not only vary by facility, but may also vary by health sector or jurisdiction.

Service delivery is affected by resource allocation and by the physical environment. Nearly half (47%) of service providers cited staff ratios and 37% cited physical environment as barriers to their ability to adequately provide services.

2.4 Canadians with a neurological condition and their informal caregivers typically rate the adequacy of health services lower than do their health care providers

The Health Services Project [7] compared the perspectives of 100 LINC Project [9] participants with the perspectives of 100 health care providers. Individuals from each group were questioned about the perceived adequacy of various aspects of health care services,Footnote 33 with a qualitative rating scale of providing: ‘little or no’, ‘basic or intermediate’, ‘advanced’, or ‘optimal’ support. Overall, Canadians living with a neurological condition (or their caregivers) rated health care services lower than did service providers; mean scores given by patients were all in the ‘little or no’ to ‘basic or intermediate’ support ranges, while provider’s scores were in the ‘basic or intermediate’ to ‘advanced’ range.

Improvements are required for goal setting and continuity of care. Goal setting, follow-up, and coordination received the lowest rankings by patients, with mean scores that indicated ‘little or no’ support. Health care providers also gave their lowest score to this aspect of health care services, but their ratings were in the ‘basic or intermediate’ range.

Integrated multidisciplinary care is important. Neither patients nor health care providers rated any aspect of service provision as ‘optimally integrated’ for chronic illness. About a third of respondents in the LINC Project [9] reported having access difficulties when seeking a specialist appointment. The Health Services Project [7] also demonstrated gaps in access to, and availability of, current services to support transitions between settings (e.g. pediatric to adult, community to long-term care) and reiterated the existing need to address social determinants of health such as education, employment, housing and transportation.

Satisfaction is high for some health services. In general, high levels of overall satisfaction were expressed by the 30% of LINC Project [9] respondents who accessed community-based services. Also, a sample of 104 parents of children with cerebral palsy rated the services their children had received quite highly using the Measure of Process of Care questionnaire [4].^{Footnote 34}

2.5 An obligation is placed on family and friends to provide care

Care provided by family, friends, and neighbours, termed ‘informal caregiving’ throughout the Study, is an important service required and received by many individuals with a neurological condition. Almost half (45%) of LINC respondents reported that they received informal care [9]. At a national level, 39.6% of Canadians with a neurological condition (excluding migraine) received informal assistance that included general help with activities (78.7%), transportation (77.1%), and meal preparation and delivery (63.0%) (Figure 2-2, section 2.1) [16]. Among Canadians living with a neurological condition (excluding migraine), 81.3% were receiving informal assistance for emotional support, which was the most frequently reported category. Excluding migraine, women were more likely to use informal assistance compared to men. When migraine was also considered, the proportion of informal assistance used on a monthly basis or less increased for both men and women (Figure 2-3).

NOTES:

Data were weighted to represent the Canadian population living with a neurological condition and were based on self- or proxy-report.

SLNCC

Survey on Living with Neurological Conditions in Canada.

E

Interpret with caution; coefficient of variation between 16.6% and 33.3%.

SOURCE: 2011-2012 SLNCC data (Statistics Canada).

2.6 Information concerning the health service needs for children with a neurological condition is limited

Although data concerning health services for children with a neurological condition were scarce in the Study, available findings suggested that health services for some children may have been sub-optimal or would have benefited from clearer care pathways.

Children living with a neurological condition require regular use of health services, but these services are sometimes lacking. It was estimated that a fifth of children with a neurological condition in the LINC Project [9] had not seen a general practitioner or pediatrician in the previous year, and only two-thirds had received specialist physician care. Children with newly diagnosed cerebral palsy utilized a range of rehabilitation services [4], but it was noted that services such as these were often not available when a condition was long-standing or if the condition was combined with a cognitive impairment [8]. In general, the Health Services Project [7] survey of providers found that there were fewer services offered for children (age 0 to 17 years) when compared to those available to adults.

2.7 The health service needs for First Nations and Métis individuals with a neurological condition pose unique challenges

The NWAC Project [11] team identified several challenges met by First Nations and Métis individuals requiring health care services for neurological conditions. They included the following:

• The lack of accessible specialized health care and diagnostic services in northern, rural, or remote locations;
• Transportation to health care services, especially for individuals living in remote areas;
• Difficulties navigating the health system in relation to which level of government was responsible;
• Lack of support and training for families with a member affected by a neurological condition;
• The need for better cultural competence among health care providers;
• The lack of understandable information regarding neurological conditions; and
• The need for greater awareness in First Nations and Métis populations about neurological conditions to address stigma associated with these conditions.

Overcoming these challenges would entail actions such as working more closely with First Nations and Métis individuals, increasing the availability of services in their respective communities, instituting holistic approaches to healing, providing opportunities for traditional ceremonies and gatherings, and making advocates or guides available to First Nations and Métis individuals accessing the health care system.

2.8 The prediction and evaluation of health care needs can be informed by Study findings

Comprehensive assessment tools, such as the interRAI suite of assessment instruments, can improve accuracy when defining the care needs of individuals with chronic neurological conditions rather than basing decisions on diagnostic information alone. For example, the interRAI Project [8] noted that health care needs in chronic care settings were better defined by the type of functional impairment rather than by diagnostic category.

Other projects of the Study also identified areas that merit further evaluation. By using data extracted from the electronic medical records (EMRs) of primary care physicians, the EMR Project [6] determined that significant numbers of patients with dementia or parkinsonism were not being prescribed potentially beneficial condition-specific medications by their primary care physicians. With respect to rehabilitative services, the interRAI Project [8] found that the combination of a neurological condition and cognitive impairment was a significant barrier, where individuals with cognitive impairment were less likely to receive occupational therapy and life skills training than individuals without cognitive impairment.

2.9 Looking ahead: 2011 to 2031

Results from the Microsimulation Project [10], which are based on status quo assumptions,^{Footnote 35} project that:

• Total annual health care costs for individuals age 40 years and older with Alzheimer’s disease and other dementias and Parkinson’s disease/parkinsonism will double between 2011 and 2031. For the other five modelled neurological conditions, direct health care costs will increase, but not as significantly.
• Acute hospitalizations will remain as the largest contributor to total direct health care costs for all the modelled neurological conditions except for Alzheimer’s disease and other dementias, where facilities-based long-term care will remain as the largest contributor.
• By 2031, total direct health care costs for Canadians with the seven modelled neurological conditions will be, depending on the condition, $0.6 billion to $13.3 billion greater than the health care costs of Canadians without these conditions. Thus, if within the next 20 years, innovations in care, prevention, and treatment allowed health care utilization by Canadians with the modelled neurological conditions to move toward the utilization seen in those without these conditions, a substantial amount of health care resources could be used to meet other needs.
• Based on health status (defined by HUI-3 scores rather than unmet care needs), the numbers of Canadians with Alzheimer’s disease and other dementias or Parkinson’s disease/parkinsonism who are likely candidates for informal care will nearly double in the next 20 years (Figure 2-4). For other conditions modelled in the Microsimulation Project [10], the need for informal care is expected to rise moderately. Given current sociodemographic changes in Canada (such as smaller families and greater geographic dispersion) it is likely that innovative changes will be required to meet these increased care demands.

NOTES:

*

Traumatic brain and spinal cord injuries were based on hospitalized cases, and excluded injuries that did not present to hospital.

SOURCE: POHEM-Neurological (Statistics Canada and Public Health Agency of Canada).

• Although data are not shown, the number of hours of informal care needed each week by an individual living with one of the seven modelled neurological conditions will remain relatively stable in 2031 compared to 2011, where an estimated average of 18 hours of informal care per week is required for those with hospitalized traumatic brain injury, while 74 hours per week is required for those with Alzheimer’s disease and other dementias.
• The total number of hours of informal care provided per week is substantial, and is projected to increase over the next 20 years for all seven modelled neurological conditions (Figure 2-5). In particular, while the number of hours of informal care provided per week for Alzheimer’s disease and other dementias is already significantly higher when compared to the other modelled conditions, this number is expected to double by 2031.

NOTES:

*

Traumatic brain and spinal cord injuries were based on hospitalized cases, and excluded injuries that did not present to hospital.

SOURCE: POHEM-Neurological (Statistics Canada and Public Health Agency of Canada).

• Out-of-pocket costs for caregivers will remain stable, ranging from approximately $1.7 thousand annually per individual living with epilepsy, to approximately $4.6 thousand annually per individual living with Alzheimer’s disease and other dementias. These projections could be affected by changes in policy concerning universally insured health care.

2.10 Knowledge gaps

Individual Study projects were limited in their coverage of health services for every Canadian jurisdiction, and were not designed to fully ascertain the wide range of out-of-pocket costs that individuals may accrue because of their neurological condition. Specifically, health service gaps were identified, such as:

• The inconsistent availability of multidisciplinary care;
• The application of eligibility criteria, especially restrictions on the provision of care for individuals with mental health disorders, and an assessment of the burden that these restrictions place on patients with a neurological condition compared to those without a neurological condition.

Data on health services for Canadians living with a neurological condition were lacking or deficient regarding:

• The distribution and quality of health services across the various regions and jurisdictions of Canada;
• The current costs of providing care for individuals with a neurological condition in continuing care (home care programs, long-term care facilities) as well as in acute care settings across the country;
• The personal cost of medications for individuals with each neurological condition, especially given that all provincial and territorial drug plans involve co-payments;
• The perceptions of health care providers on the accessibility, timeliness, and quality of health services for individuals with a neurological condition;
• The provision of health care for First Nations, Inuit, and Métis populations, for vulnerable populations, and for children with a neurological condition.

Applying the best currently available knowledge gained from Study projects, such as addressing potential barriers in access to care or the physical and mental health needs identified by Canadians living with a neurological condition, can help improve the adequacy of the health care system for individuals navigating through the care options for their neurological condition.

2.11 Key themes

In this chapter, which examined existing health services for individuals living with or affected by a neurological condition in Canada, it was noted that:

• Community-based services as well as hospital-based health care programs and resources are both important components of effective health service delivery.
• Many of those with a neurological condition receive extensive services from informal caregivers, and these caregivers often require emotional and financial support.
• Cultural background and language must be considered in the delivery of health care services for individuals with a neurological condition.
• Functional ability, as well as diagnosis, needs to be considered when developing care plans for individuals living with a neurological condition.
• Individuals with milder forms of neurological conditions also have specific needs that require recognition and support.
• It is important to recognize the impact and complexities of mental health comorbidities in individuals with a neurological condition and their caregivers. Currently, there are insufficient services and service providers to address the coexistence of mental health disorders and neurological conditions, in spite of evidence documenting this need.
• Individuals with a neurological condition need transition support as they move along the continuum of care, which is often directed by the progression of their condition.
• Individuals with a neurological condition would benefit from the current moves in some jurisdictions to modify chronic care; these changes could be guided by models, such as the recently developed revised chronic care model that incorporates environmental, social, and educational factors.
• The utilization and cost of drugs, including co-payments, is a significant component of overall health care costs, both for individuals living with a neurological condition and for the health care system.

Microsimulation modelling of seven neurological conditions projects that by 2031:

• Total annual health care costs (direct costs) will increase for each of the seven modelled neurological conditions, and will be twice as high for Canadians age 40 years and older with Alzheimer's disease and other dementias and Parkinson's disease/parkinsonism.
• Acute hospitalizations will continue to be the largest contributor to total direct health care costs for all the modelled neurological conditions except Alzheimer’s disease and other dementias, where facilities-based long-term care will remain as the largest contributor.
• Increased numbers of Canadians with the seven modelled neurological conditions will become likely candidates for informal care (based on their health status as defined by their HUI-3 score), and for those with Alzheimer's disease and other dementias and Parkinson's disease/parkinsonism, the number of candidates for informal care will nearly double.