Introduction
Functional neurological disorder
Functional Neurological Disorder (FND), also known as conversion disorder, presents with a range of neurological symptoms that are incongruent with a clearly identifiable neurological disease. For example, patients may exhibit arm weakness on a physical exam, but demonstrate no damage to the brain on imaging. Symptoms are associated with impaired health-related quality of life, comparable to other disabling neurological diseases such as Parkinson’s Disease. Many patients with FND also report psychiatric co-morbidities, such as anxiety, depression and dissociation, all of which are associated with poorer outcomes. Patients experience high levels of disability and emotional distress due to their symptoms, pointing towards the need for effective management strategies.
Access to care for FND
The burden of FND is high, resulting in increased health care costs, increased stigma and decreased quality of life, yet medical services are not always set up to meet patients’ needs. Documented barriers to accessing healthcare services in Canada include long wait times, shortages of clinicians, inequities due to structural racism, in addition to geography or demographics (e.g., rural areas, Indigenous communities), concerns about stigma and the lack of psychiatric and neurological care integration. Long wait times are an especially important negative predictor of FND outcomes, as a long duration of symptoms before diagnosis leads to a worse prognosis. There is a demonstrated need for more structured care pathways for Canadians. The stepped-care framework originally developed to improve efficiency in the delivery of primary care represents an accessible approach for FND management in Canada. We use this framework to outline the roles of the general practitioner (GP), neurologist and allied healthcare professionals in stepped care for FND.
Stepped-care models
The principles of stepped care
Stepped care is a healthcare delivery framework to re-allocate resources and match patients with the appropriate evidence-based treatment that suits their level of need. Upon initial consultation with a GP, patients may start with a low-intensity evidence-based treatment, and if they do not respond adequately, can step up to a treatment of higher intensity. Low-intensity treatments are those that require less time from a professional than conventional treatment, such as self-help resources (e.g., books and internet resources). Higher-intensity treatments are more resource intensive, involving care from attending-level clinicians (e.g., specialist care from a neurologist). Higher level of management may be appropriate for patients with refractory neurological symptoms and severe, co-morbid psychiatric disorder. The decision to step down or up levels involves ongoing monitoring and shared decision-making between the individual and their healthcare team.
Introduction of a stepped-care approach in the UK
A stepped-care model was initially introduced to the UK’s National Health Service (NHS) in 2008 and has since been applied to the UK’s NHS Talking Therapies programme for the treatment of psychiatric problems. In step 1 of this programme, GPs identify possible mental health difficulties. Patients with mild to moderate symptoms are referred to step 2, which consists of self-led or peer-led interventions (e.g., self-help based on the principles of cognitive behavioural therapy (CBT), a structured group physical activity programme and group-based peer support). Patients with inadequate response to step 2 interventions or more severe symptoms proceed to step 3, specialist care. Therefore, initial treatment can be managed by GPs and allied healthcare professionals before specialists are consulted on an as-needed basis. The intensity and duration of delivery is optimised to meet the needs of the person throughout the treatment process.
Applying a stepped-care approach to FND
The UK’s stepped-care model has since been adapted specifically for FND in Scotland. The roles of a GP, neurologist and allied healthcare professionals differ from that of the NHS Talking Therapies Programme; in step 1, functional neurological symptoms need to be diagnosed and explained by a neurologist. This is because diagnosing FND often requires knowledge and skills possessed by a specialist. Evidence from a study of 260 patients from Glasgow showed that a proportion of patients do well with communication of the diagnosis as the only intervention,
Reference McKenzie, Oto, Russell, Pelosi and Duncan1
suggesting that simple communication strategies that are implemented in Step 1 can increase patient satisfaction and outcomes. In step 2, brief treatments can be offered for symptoms when explanation alone is insufficient, or for patients with more moderate disability. Treatments in this step are conducted by allied healthcare professionals specifically trained in the treatment of FND. For example, patients with physical disabilities may benefit from physiotherapists’ or occupational therapists’ treatment, while other patients may benefit from self-guided psychological therapies. Step 3 involves complex care for severe and intractable FND symptoms, and mental health specialists would be consulted. For example, neurologists may refer the patient to psychiatrists for specific treatments (e.g., cognitive distraction techniques for non-epileptic attacks). This is appropriate as severe presentations of functional symptoms are often comorbid with psychiatric disorders (e.g., mood disorders, psychological traumas, abuse and neglect experiences), representing an opportunity for further education and explanation of the psychological nature of the diagnosis. Step 3 emphasises the importance of a collaborative, patient-centred approach to care.
Adapting the stepped-care approach in Canada
An expanded, nine-step framework termed “Stepped Care 2.0” (SC2.0) was proposed by the Canadian psychotherapist Dr Peter Cornish for use in the Canadian mental health context.
Reference Cornish2
Step 1 focuses on self-directed informational resources and watchful waiting. This could include community-led programmes and self-directed learning, such as peer-led programmes and accessing on-line resources alone. The possibility of “watchful waiting” involves no specific recommendation, but continued monitoring. Step 2 involves increased commitment to self-directed learning in mental health literacy, and typically involves completing workbooks or worksheets. Step 3 involves family and community-based peer support (e.g., reaching a counsellor through the Kids Help Phone line). Step 4 consists of workshops, representing the first point where clinicians actively support patients through group therapy and psychoeducation methods. The aim of these workshops is mainly educational and does not involve personal disclosure. Step 5, “guided self-help,” represents a more active learning commitment, akin to the so-called “flipped classroom” learning method. Participants are asked to access presentations asynchronously and then attend weekly interactions with an instructor to discuss questions and motivate task completion. Step 6, “intensive group programming,” is group psychotherapy. Step 7 is individual psychotherapy, while step 8 involves chronic care and specialist consultation (e.g., for psychiatrists to advise GPs on treatment plans of complex cases). Step 9 expands the scope of care to include additional interventions by community-based organisations. For example, CHANNAL (a local community-based peer network) operates drop-in active listening centres across Newfoundland and Labrador. This final step also involves collaboration with allied healthcare providers (e.g., social workers, physiotherapists, occupational therapists).
Examples of a stepped-care approach in Canada
There are examples of successfully integrating a stepped care 2.0 approach within the Canadian healthcare system. Foundry is a provincial network of integrated health and social service centres for young people aged 12–24 operating on a stepped-care model across British Columbia. Youth Wellness Hubs Ontario also provide integrated services to address various health care needs (e.g., primary care, mental health and community support) with a stepped-care framework. Furthermore, using a stepped-care approach has eliminated wait times for access to the Ottawa Hospital Pain Clinic and resulted in improved communication between interdisciplinary teams.
Reference Bell, Cornish and Gauthier3
We believe that the successes seen across various contexts may be transferable to neurological care for FND.
Guiding principles for building a stepped-care model for FND in Canada
When adapting the stepped-care model for FND in the Canadian healthcare context, the guiding principles of the Stepped Care Models Working Group should be applied.
Reference Mughal, Salmon, Churchill, Tee, Jaouich and Shah4,5
First, stepped care should provide varied neurological services across a continuum of care, across a range of intensities (each requiring different levels of commitment from the clinician and patient). Second, stepped care should be patient-centred, based on individual readiness, goals and priorities. Third, services should form a cohesive system that allows for seamless movement between steps. For example, more severely affected patients could move directly from Step 1 to Step 3 while patients in remission may be stepped down to self-help interventions. Decisions to move across steps would be made by the patient and their care team, with the neurologist overseeing and facilitating the process. Fourth, validated tools should help guide the evaluation of patients and service providers. Quality improvement investigations and other patient engagement tools (e.g., focus groups, surveys) can be used to include the voices of service users and those with lived expertise. Fifth, decisions about offered services, providers and access points should be flexible and dynamic to the needs of the community. For example, populations with a large proportion of elderly residents will have different needs than those that have a large proportion of youth. As no two communities will have the same healthcare needs, efforts should respond to the priorities of the populations they serve.
Proposed stepped-care model for FND in Canada
We adapted the 3-step care model for FND in Scotland (section 2.3) using the guiding principles (section 2.6) to create a 7-step model for FND management in Canada (Table 1). We propose steps 1 and 2 to represent a formal diagnosis and explanation of FND by a neurologist, respectively. Step 3 is a follow-up appointment, where a neurologist may provide a more detailed explanation of FND. This may be useful in the case where the setting of initial diagnosis and explanations were not conducive to prolonged discussions (e.g., in an emergency room). Step 4 represents low-intensity treatments. When explanation alone is insufficient, or with patients with moderate disability, a neurologist may refer patients for brief, low-intensity interventions such as interactive self-directed learning on websites, books, family and community-based peer support or on-line cognitive behavioural therapy. In step 5, allied healthcare professionals with FND training (e.g., occupational therapists, psychologists and social workers) may deliver a brief intervention, such as a single consultation about coping strategies. In the case where ongoing care is beneficial, step 6 involves delivering ongoing care by allied healthcare professionals. For example, patients may be referred to and followed by physiotherapy/occupational therapy, rehabilitation medicine or chronic pain services. Step 7 includes referral to high-intensity interventions, such as to psychiatric care or a specialised FND clinic. This step is reserved for patients with severe symptoms, those not responding to prior steps, or those with serious co-morbid psychiatric illness with severe and intractable FND. We therefore propose for FND to be managed through a shared decision-making approach with the effective oversight of a neurologist, and the collaboration of allied healthcare professionals to navigate a stepped-care approach for FND management.
Table 1: Seven-step model for functional neurological disorder management in Canada
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Introduction
Functional neurological disorder
Functional Neurological Disorder (FND), also known as conversion disorder, presents with a range of neurological symptoms that are incongruent with a clearly identifiable neurological disease. For example, patients may exhibit arm weakness on a physical exam, but demonstrate no damage to the brain on imaging. Symptoms are associated with impaired health-related quality of life, comparable to other disabling neurological diseases such as Parkinson’s Disease. Many patients with FND also report psychiatric co-morbidities, such as anxiety, depression and dissociation, all of which are associated with poorer outcomes. Patients experience high levels of disability and emotional distress due to their symptoms, pointing towards the need for effective management strategies.
Access to care for FND
The burden of FND is high, resulting in increased health care costs, increased stigma and decreased quality of life, yet medical services are not always set up to meet patients’ needs. Documented barriers to accessing healthcare services in Canada include long wait times, shortages of clinicians, inequities due to structural racism, in addition to geography or demographics (e.g., rural areas, Indigenous communities), concerns about stigma and the lack of psychiatric and neurological care integration. Long wait times are an especially important negative predictor of FND outcomes, as a long duration of symptoms before diagnosis leads to a worse prognosis. There is a demonstrated need for more structured care pathways for Canadians. The stepped-care framework originally developed to improve efficiency in the delivery of primary care represents an accessible approach for FND management in Canada. We use this framework to outline the roles of the general practitioner (GP), neurologist and allied healthcare professionals in stepped care for FND.
Stepped-care models
The principles of stepped care
Stepped care is a healthcare delivery framework to re-allocate resources and match patients with the appropriate evidence-based treatment that suits their level of need. Upon initial consultation with a GP, patients may start with a low-intensity evidence-based treatment, and if they do not respond adequately, can step up to a treatment of higher intensity. Low-intensity treatments are those that require less time from a professional than conventional treatment, such as self-help resources (e.g., books and internet resources). Higher-intensity treatments are more resource intensive, involving care from attending-level clinicians (e.g., specialist care from a neurologist). Higher level of management may be appropriate for patients with refractory neurological symptoms and severe, co-morbid psychiatric disorder. The decision to step down or up levels involves ongoing monitoring and shared decision-making between the individual and their healthcare team.
Introduction of a stepped-care approach in the UK
A stepped-care model was initially introduced to the UK’s National Health Service (NHS) in 2008 and has since been applied to the UK’s NHS Talking Therapies programme for the treatment of psychiatric problems. In step 1 of this programme, GPs identify possible mental health difficulties. Patients with mild to moderate symptoms are referred to step 2, which consists of self-led or peer-led interventions (e.g., self-help based on the principles of cognitive behavioural therapy (CBT), a structured group physical activity programme and group-based peer support). Patients with inadequate response to step 2 interventions or more severe symptoms proceed to step 3, specialist care. Therefore, initial treatment can be managed by GPs and allied healthcare professionals before specialists are consulted on an as-needed basis. The intensity and duration of delivery is optimised to meet the needs of the person throughout the treatment process.
Applying a stepped-care approach to FND
The UK’s stepped-care model has since been adapted specifically for FND in Scotland. The roles of a GP, neurologist and allied healthcare professionals differ from that of the NHS Talking Therapies Programme; in step 1, functional neurological symptoms need to be diagnosed and explained by a neurologist. This is because diagnosing FND often requires knowledge and skills possessed by a specialist. Evidence from a study of 260 patients from Glasgow showed that a proportion of patients do well with communication of the diagnosis as the only intervention, Reference McKenzie, Oto, Russell, Pelosi and Duncan1 suggesting that simple communication strategies that are implemented in Step 1 can increase patient satisfaction and outcomes. In step 2, brief treatments can be offered for symptoms when explanation alone is insufficient, or for patients with more moderate disability. Treatments in this step are conducted by allied healthcare professionals specifically trained in the treatment of FND. For example, patients with physical disabilities may benefit from physiotherapists’ or occupational therapists’ treatment, while other patients may benefit from self-guided psychological therapies. Step 3 involves complex care for severe and intractable FND symptoms, and mental health specialists would be consulted. For example, neurologists may refer the patient to psychiatrists for specific treatments (e.g., cognitive distraction techniques for non-epileptic attacks). This is appropriate as severe presentations of functional symptoms are often comorbid with psychiatric disorders (e.g., mood disorders, psychological traumas, abuse and neglect experiences), representing an opportunity for further education and explanation of the psychological nature of the diagnosis. Step 3 emphasises the importance of a collaborative, patient-centred approach to care.
Adapting the stepped-care approach in Canada
An expanded, nine-step framework termed “Stepped Care 2.0” (SC2.0) was proposed by the Canadian psychotherapist Dr Peter Cornish for use in the Canadian mental health context. Reference Cornish2 Step 1 focuses on self-directed informational resources and watchful waiting. This could include community-led programmes and self-directed learning, such as peer-led programmes and accessing on-line resources alone. The possibility of “watchful waiting” involves no specific recommendation, but continued monitoring. Step 2 involves increased commitment to self-directed learning in mental health literacy, and typically involves completing workbooks or worksheets. Step 3 involves family and community-based peer support (e.g., reaching a counsellor through the Kids Help Phone line). Step 4 consists of workshops, representing the first point where clinicians actively support patients through group therapy and psychoeducation methods. The aim of these workshops is mainly educational and does not involve personal disclosure. Step 5, “guided self-help,” represents a more active learning commitment, akin to the so-called “flipped classroom” learning method. Participants are asked to access presentations asynchronously and then attend weekly interactions with an instructor to discuss questions and motivate task completion. Step 6, “intensive group programming,” is group psychotherapy. Step 7 is individual psychotherapy, while step 8 involves chronic care and specialist consultation (e.g., for psychiatrists to advise GPs on treatment plans of complex cases). Step 9 expands the scope of care to include additional interventions by community-based organisations. For example, CHANNAL (a local community-based peer network) operates drop-in active listening centres across Newfoundland and Labrador. This final step also involves collaboration with allied healthcare providers (e.g., social workers, physiotherapists, occupational therapists).
Examples of a stepped-care approach in Canada
There are examples of successfully integrating a stepped care 2.0 approach within the Canadian healthcare system. Foundry is a provincial network of integrated health and social service centres for young people aged 12–24 operating on a stepped-care model across British Columbia. Youth Wellness Hubs Ontario also provide integrated services to address various health care needs (e.g., primary care, mental health and community support) with a stepped-care framework. Furthermore, using a stepped-care approach has eliminated wait times for access to the Ottawa Hospital Pain Clinic and resulted in improved communication between interdisciplinary teams. Reference Bell, Cornish and Gauthier3 We believe that the successes seen across various contexts may be transferable to neurological care for FND.
Guiding principles for building a stepped-care model for FND in Canada
When adapting the stepped-care model for FND in the Canadian healthcare context, the guiding principles of the Stepped Care Models Working Group should be applied. Reference Mughal, Salmon, Churchill, Tee, Jaouich and Shah4,5 First, stepped care should provide varied neurological services across a continuum of care, across a range of intensities (each requiring different levels of commitment from the clinician and patient). Second, stepped care should be patient-centred, based on individual readiness, goals and priorities. Third, services should form a cohesive system that allows for seamless movement between steps. For example, more severely affected patients could move directly from Step 1 to Step 3 while patients in remission may be stepped down to self-help interventions. Decisions to move across steps would be made by the patient and their care team, with the neurologist overseeing and facilitating the process. Fourth, validated tools should help guide the evaluation of patients and service providers. Quality improvement investigations and other patient engagement tools (e.g., focus groups, surveys) can be used to include the voices of service users and those with lived expertise. Fifth, decisions about offered services, providers and access points should be flexible and dynamic to the needs of the community. For example, populations with a large proportion of elderly residents will have different needs than those that have a large proportion of youth. As no two communities will have the same healthcare needs, efforts should respond to the priorities of the populations they serve.
Proposed stepped-care model for FND in Canada
We adapted the 3-step care model for FND in Scotland (section 2.3) using the guiding principles (section 2.6) to create a 7-step model for FND management in Canada (Table 1). We propose steps 1 and 2 to represent a formal diagnosis and explanation of FND by a neurologist, respectively. Step 3 is a follow-up appointment, where a neurologist may provide a more detailed explanation of FND. This may be useful in the case where the setting of initial diagnosis and explanations were not conducive to prolonged discussions (e.g., in an emergency room). Step 4 represents low-intensity treatments. When explanation alone is insufficient, or with patients with moderate disability, a neurologist may refer patients for brief, low-intensity interventions such as interactive self-directed learning on websites, books, family and community-based peer support or on-line cognitive behavioural therapy. In step 5, allied healthcare professionals with FND training (e.g., occupational therapists, psychologists and social workers) may deliver a brief intervention, such as a single consultation about coping strategies. In the case where ongoing care is beneficial, step 6 involves delivering ongoing care by allied healthcare professionals. For example, patients may be referred to and followed by physiotherapy/occupational therapy, rehabilitation medicine or chronic pain services. Step 7 includes referral to high-intensity interventions, such as to psychiatric care or a specialised FND clinic. This step is reserved for patients with severe symptoms, those not responding to prior steps, or those with serious co-morbid psychiatric illness with severe and intractable FND. We therefore propose for FND to be managed through a shared decision-making approach with the effective oversight of a neurologist, and the collaboration of allied healthcare professionals to navigate a stepped-care approach for FND management.
Table 1: Seven-step model for functional neurological disorder management in Canada
Conclusion
Functional Neurological Disorder is a disabling neurological condition, yet barriers to accessing healthcare services persist. We adapt principles from stepped care for FND in Scotland, the SC2.0 framework and the Stepped Care Models Working Group to create a 7-step model for FND management in Canada. Taking a shared decision-making approach throughout will allow us to respond to the many challenges of accessing and managing FND in the Canadian context.
Acknowledgements
MT wishes to acknowledge the support of Frayme’s Knowledge Mobilization Fellowship. She also thanks the broader fellowship team—Heather McLaughlin and Lauren Iuliani for their support throughout this project.
Author contribution
All authors contributed to the initial discussions, reviewed drafts and approved the final version of this manuscript.
Funding statement
None.
Competing interests
None.