Qualitative themes

There was considerable overlap in ideas obtained from all groups. All groups endorsed limited resources and centralization of resources, regarding travel and its associated costs as a barrier to access for patients. Additionally, respondents from every group expressed concerns about long wait times and the impact of a limited number of movement disorder specialists and functional neurosurgeons. All respondent groups also shared similar concerns about the need for education of patients and care providers regarding diagnosis and treatment of movement disorders and the benefits and availability of DBS along with its indications.

In general, concerns regarding travel and lack of resources were more commonly expressed in respondents from Atlantic Canada and patients with PD, although the increased reporting of this concern in patients with PD may be due to the high number of PD patients/caregivers from NL in our study population. Therefore, it may be a reflection of a regional concern as opposed to disease-specific issues.

Concerns with education were more common in Central Canada and BC, as well as patients with ET and dystonia. It is possible that these regions have better access to DBS (or at least the perception of better access), and therefore, individuals are able to identify additional barriers beyond geographic and unavailability of services in their region. These themes may also be more common in ET and dystonia as these diagnoses may be more poorly understood than PD. This is supported by family physician responses, where fewer respondents provided estimates for the prevalence of these two conditions than PD and commonly responded with comments like “I have no idea” when asked about these two diagnoses. See Table 6 for a regional summary of barriers and facilitators to DBS access across Canada.

Table 6.

Regional summary of barriers and facilitators to accessing deep brain stimulation

Note: NL = Newfoundland and Labrador; NS = Nova Scotia; PEI = Prince Edward Island; NB = New Brunswick; QC = Quebec; ON = Ontario; MB = Manitoba; SK = Saskatchewan; AB = Alberta; YT = Yukon; NT = Northwest Territories; NU = Nunavut; DBS = deep brain stimulation.

DBS patients surveyed

The included patients who have undergone DBS were not reflective of previously reported access to DBS. For example, 13% of patients receiving DBS in our study were residing in NL, the province that has historically had the poorest access to this service, with one previous retrospective study of all DBS patients in Canada over a two-year period reporting 0.006% of their cohort from NL.^{Reference Honey, Malhotra, Tamber, Prud’homme, Mendez and Honey24} This overrepresentation from NL may be a result of an enthusiastic PD advocacy group in the region that effectively recruited patients to the study.

Nearly all patients who had received DBS in this study received their formal diagnosis from a neurologist, as opposed to a family physician. It is likely that neurologists have a better understanding of indications and availability of DBS and are therefore more likely to refer appropriate candidates. Literature supports the notion that movement disorder specialists are more likely to refer good candidates for DBS than other providers,^{Reference Katz26} so access to neurology and specifically movement disorder neurologists is likely an important facilitator.

In terms of the timeline for diagnosis and treatment of these patients, nearly all patients reported being diagnosed more than five years ago, with most being diagnosed more than 20 years ago. Most patients report experiencing symptoms between 1 and 5 years prior to diagnosis. Once diagnosed, the majority of these patients were referred for surgery more than two years after diagnosis and underwent surgery more than six months after referral, with 40% of patients reporting a period greater than two years between patient referral and surgical implantation. Qualitative responses from all groups indicate waitlists of 2–5 years for DBS across Canada. It is unclear at what time patients who received DBS were implanted, so it is possible that delays associated with COVID-19, or any other number of factors, have increased wait list times since these patients underwent surgery. This is one area for future research to determine the duration of waitlists and solutions to decrease surgical wait times for DBS patients.

Proposed solutions

A number of policy changes are required to address access to DBS in Canada, with varying approaches between regions of the country. The first potential solution is increasing resources, including the number of movement disorder specialists and functional neurosurgeons. It should be noted that this could provide a long-term impact; however, time is required for the training of additional specialists that could improve access. This would ameliorate some of the burden of waitlists and, to some extent, travel for individual patients. However, beyond increasing the number of providers in population-dense regions, this would not decrease the burden of travel and expenses for Canadians living in isolated regions of our country, like Atlantic Canada, MB and Northern Canada, where patients must travel long distances for multiple appointments (assessments, surgical bookings, follow-up, reprogramming) and have limited access to emergency neurosurgical care should complications arise. In these cases, increased use of telemedicine may provide improved access to patients. The COVID-19 pandemic necessitated the use of telemedicine for many providers. Available literature suggests telemedicine provides an effective alternative to in-person care for patients living with movement disorders.^{Reference Falconer, Gow, Whitney, Walters and Rogers19,Reference Fasano, Antonini and Katzenschlager20} Patients were able to access care for surgical assessments and follow-ups and undergo re-programming, all without the inconvenience and costs incurred by traveling. Creation of telemedicine movement disorder clinics throughout the country may be an alternative to current healthcare allocation strategies, to ensure that access to care is improved for all Canadians. Increasing funding to provide travel stipends to patients may alleviate some of the financial burden reported as a barrier to accessing this service as well.

Provincial caps on the number of DBS implants available annually are a previously identified barrier.^{Reference Honey, Malhotra, Tamber, Prud’homme, Mendez and Honey24} By removing this restriction, SK has the best access in Canada.^{Reference Honey, Malhotra, Tamber, Prud’homme, Mendez and Honey24} Previous studies have shown that DBS is a cost-effective treatment strategy compared with best medical therapy alone, when considered over the lifetime of implanted patients. DBS has been shown to decrease medication costs, as well as hospitalizations and delay institutionalization of patients living with movement disorders, even accounting for costs of potential complications and hardware replacements.^{Reference Lannon, Duda and Mastrolonardo27} Therefore, providing increased access to operative time and implants at a provincial level may be a cost-effective approach that could further increase access to this beneficial therapy.

Improved education is required for patients and practitioners regarding the diagnosis of movement disorders, indications for DBS and referral patterns. Among family physicians, 76.7% reported not having a good understanding of indications for DBS, and among the seven family physicians reporting that they did have a good understanding, when asked to describe the ideal candidate for DBS, responses were vague (i.e., “someone with Parkinson’s”) or incorrect, with many family physicians believing that the ideal candidate would be a patient with medically refractory symptoms or that surgery is a “last resort.” These beliefs were reiterated by patient comments that they have been given similar information by physicians. Providing education both to patients and care providers about indications for DBS would help ensure more potential candidates for this efficacious therapy are screened and potentially assessed for DBS. Existing educational resources may improve understanding on behalf of these stakeholder groups. For example, the remote, patient-centered education platform, DBS Select,²⁸ is an educational tool to inform patients and caregivers about DBS. It is continuously updated by a team of neurologists, neurosurgeons and neuroscientists from Belgium and provides an interactive, intuitive web platform to answer many questions patients and their loved ones have. Sharing resources like this with patients upon diagnosis may ameliorate some fear and misunderstanding regarding this treatment.

Previous literature has described the ideal candidate for DBS in PD as having a disease duration of at least five years, allowing atypical forms of parkinsonism to manifest, and they should have a positive response to levodopa (defined as a greater than 30% improvement in Unified PD rating scale motor score), fluctuations, dyskinesia or refractory tremor that remains disabling despite reasonable medical optimization and should not have pre-existing dementia, psychosis or severe depression. Additionally, patients should undergo MRI to rule out secondary diagnoses or structural concerns and should be medically optimized.²⁹ Both patients and family physicians frequently cited age as an exclusion criterion for DBS; however, while evidence suggests younger patients may have improved outcomes, there is no formal age cutoff for the procedure.²⁹ For ET and primary dystonia, patients should have one of these diagnoses with symptoms that interfere with the patient’s quality of life and functionality in spite of reasonable medical management, intact cognition and absence of severe psychiatric illness.^{Reference Katz26} For all diagnoses, patients should have realistic expectations about what symptoms can be improved by DBS and should have willingness to participate in surgery. With respect to willingness to participate in surgery, few patients reported fear of surgical intervention as a reason they would be unwilling to undergo DBS. The availability of “incisionless” lesioning procedures (i.e., MRI-guided high-intensity focused ultrasound) should also be explained, providing the understanding that these procedures are also invasive with potential complications and cause permanent brain lesions, compared with DBS, where stimulation can be switched off.

Combining the above approaches requires significant collaboration. Although the Canada Health Act stipulates that individual provincial/territorial governments are responsible for overseeing and carrying out the principles of the act in their respective region, national collaboration may be warranted to improve access across Canada. Providing educational resources and clear referral pathways in each region with a regional triage system would ensure that patients residing in provinces/territories without access to this service would have the ability to be referred to a centralized service for their region. For example, a patient living in NL could, in collaboration with their family physician, receive a referral to an expanded virtual movement disorder assessment clinic in Halifax, responsible for screening and triaging patients to determine if a more comprehensive assessment is warranted. Literature suggests that patients referred for DBS by movement disorder specialist neurologists were more likely to be good candidates for DBS than patients referred from other providers.^{Reference Katz26} Therefore, ensuring patients are first assessed by movement disorder specialists, both for diagnosis, therapeutic optimization and determination of candidacy, would ensure smooth referral pathway flow for patients.

Further investigation is required to better understand how the prevalence of DBS candidates varies across Canada. Currently, no national database exists to answer this question. Improved understanding of the distribution of prevalence of these conditions is critical. It is impossible to comprehensively assess access to a service without an in-depth understanding of the candidates for that service, defining the need for it to determine if that need is being met.

Limitations

A number of limitations exist for the current study. First, there are biases inherent to survey studies, including reporting bias and issues with response rate.

Although limited in number of responses, the representativeness of the Canadian population in patient responses is fair in terms of the proportion of responses by province/territory. There are both an overrepresentation of patients/caregivers from NL (9.8% of responses compared with 1.4% of Canadian population from NL³⁰) and an underrepresentation of respondents from QC (5.9% of responses vs. 22.2% of the Canadian population³⁰), in spite of the survey being offered in both French and English. Unfortunately, there were no responses from Prince Edward Island (PEI), Yukon (YT), Northwest Territories (NWT) or Nunavut (NT). It is important to consider these patient perspectives, given the likely poor access to care in these regions;^31,32 however, low response rates may be expected, given the low populations in these areas (0.4% of the Canadian population for PEI and 0.1% of the national population in each of the territories³⁰). All other regions were represented within 2% of the national proportion of the population residing in the respective provinces.

In terms of physician groups, family physicians from NL are again overrepresented (20% of respondents compared with the 2.1% of Canadian family physicians practicing in NL), QC is again underrepresented (3.3% of responses vs. 24.4% of Canadian family physicians³³) and AB is underrepresented (6.6% of respondents vs. 13.0%³³). All other regions are within 4% of the proportion of Canadian family physicians for each province and territory. Again, no responses were obtained from family physicians practicing in PEI (0.4% of Canadian family physicians³³) or the territories, which collectively represent 0.3% of family physicians in Canada.³³ The overrepresentation of physicians from NL may have resulted from an active PD society in the province, with advocates eager to promote improved access in the region, as indicated by their contact with us in the early stages of study design. Although we attempted to promote recruitment in QC through the inclusion of French language studies, this may not have been clear to potential participants, as English language information about the study was presented prior to French study information in all correspondence.

Both neurology and neurosurgery were limited in responses, with 22 neurologists responding from 4 provinces and 12 neurosurgeons responding from 3 provinces. This paucity of data from regions of Canada with probable limited access signifies an important missing voice in this narrative. While multiple attempts were made at recruiting participants from these groups, including two faxes and two separate emails, the low response rate may have resulted from recruitment strategies. Many physicians and surgeons receiving faxes would need to be provided the faxed information by administrative personnel. Previous research suggests that physicians are more responsive to mail surveys and that response rates to email are traditionally in the range of 25–30%, due to survey fatigue, competing demands and privacy concerns.^{Reference Fincham34} Additionally, nearly all responses from neurologists and neurosurgeons are from practitioners in urban settings. Barriers identified by these physicians and surgeons may be vastly different from those in rural settings elsewhere in the country. It is important to note, however, that of all groups surveyed, neurologists and neurosurgeons see patients who have already overcome many barriers to access specialist services, and the ability of these specialists to identify barriers to care may be skewed as a result. The ideas obtained from family physicians and patients/caregivers likely provide a more realistic picture of access.

In terms of estimations of the proportion of patients referred for DBS who go on to receive the treatment, the broad scope of practice of respondents likely hinders the estimations provided. Specifically, only half the neurologists responding were movement disorder specialists. Stroke neurologists, for example, would not be expected to understand the proportion of patients referred for DBS who go on to receive it. Similarly, half of the neurosurgeon respondents reported providing DBS as part of their practice. A spine surgeon would not be expected to understand the complexities of the referral pathway for DBS and therefore is unlikely to make an accurate estimate as to the proportion of referred patients who undergo DBS. Even functional neurosurgeons may not be able to predict the likelihood of a patient undergoing DBS, given that they are situated at the endpoint of this complex referral pathway, as discussed previously. Confidence in these estimations is therefore limited; responses from movement disorder neurologists are more in keeping with literature estimates, and we would expect the most reflective of true referral patterns.