What Is the Role of a Specialist Assessment Clinic for FND? Lessons From Three National Referral Centers
Publication: The Journal of Neuropsychiatry and Clinical Neurosciences
Abstract
Objective:
A growing interest in functional neurological disorders (FND) has led to the development of specialized clinics. This study aimed to better understand the structure and role of such clinics.
Methods:
Data were retrospectively collected from clinical records at three national referral centers, two specifically for motor FND and one for FND in general. Data were for 492 consecutive patients referred over a 9- to 15-month period: 100 from the United Kingdom clinic, 302 from the Swiss clinic, and 90 from the Canadian clinic. Data included symptom subtype and duration, comorbid pain and fatigue, disability, and treatment recommendations.
Results:
The mean age of the 492 patients was 44 years, and most (73%) were female. Most had a prolonged motor FND (mean symptom duration of 6 years); 35% were not working because of ill health, 26% received disability benefits, and up to 38% required a care giver for personal care. In the Swiss cohort, 39% were given a diagnosis of another somatic symptom disorder rather than an FND diagnosis. Pain was common in the United Kingdom (79%) and Canada (56%), as was fatigue (48% and 47%, respectively). Most patients (61%) were offered physiotherapy; referral to neuropsychiatry or psychology differed across centers (32%−100%).
Conclusions:
FND specialty clinics have an important role in ensuring correct diagnosis and appropriate treatment. Most patients with motor FND require specialized neurophysiotherapy. Patients readily accepted an integrated neuropsychiatric approach. Close collaboration between FND clinics and acute neurology facilities might improve early detection of FND and could improve outcomes.
Recent years have seen a resurgence in interest in functional neurological disorders (FND), fueled by the recognition of their frequency and the profound disability that they cause (1). Increased understanding of the underlying neurobiology (2–4) has developed hand in hand with new clinical management strategies and a growing evidence base for rehabilitative treatments (5, 6). Yet a gap exists in clinical practice because only a few clinical facilities worldwide have dedicated expertise and resources to coordinate the diagnosis and treatment of FND within a specialist service (7–9).
This study explored the utility of specialist FND clinics, based on experience from programs developed in the United Kingdom (2008) Switzerland (2016) and Canada (2018). A critical view is offered on how such services may be optimally developed in the future.
Experiences of Three New Referral Centers
United Kingdom
Our specialist functional movement disorder (FMD) neurology-led clinic (first established at the National Hospital for Neurology and Neurosurgery and now relocated to St George’s University Hospital) is a tertiary service, with most referrals coming from other neurologists. The primary aims of the clinic are to provide a second opinion when there is diagnostic uncertainty, to provide patients and their families with information and education about the diagnosis, and to triage patients into appropriate treatment services depending on their symptoms and comorbidities. Over time, the clinic has expanded to include four neurologists and direct links to an FND-specialist neurophysiotherapy program, outpatient neuropsychiatry, clinical psychology, and inpatient multidisciplinary rehabilitation (MDT). We aim to offer a follow-up appointment after completion of treatment and then try to arrange local follow-up in primary care, general neurology, or local mental health services, depending on need. In practice, we often struggle to discharge patients from our service because they report benefit from ongoing contact with us, even if we are not providing active treatment. We are currently developing a specialist nurse role to aid transition back to local services. This person could also provide a point of contact for patients and local care providers in times of crisis or to deal with queries that do not require face-to-face follow-up.
Switzerland
On the background of a merger of the Psychosomatic Unit within the Neurology Department, we opened a new outpatient service at Bern University Hospital, a bilingual tertiary center receiving referrals from all Switzerland. Neurologists and general practitioners were informed that they could refer suspected FND cases for diagnosis and treatment. Three neurologists receive the new referrals to confirm the diagnosis and offer interdisciplinary treatment. The neurologists also do in-house consultation for individuals suspected of having FND who are hospitalized. Interdisciplinary treatment consists of 1-hour follow-up appointments with the neurologist alone or in joint sessions with the psychologist; in these sessions cognitive-behavioral therapy (CBT) is provided, based on published workbooks specific for FND (10). In parallel, individual sessions with a physiotherapist and individual or group sessions with an occupational therapist are organized. A weekly interdisciplinary meeting allows all disciplines to share information in order to set goals and milestones for patients following therapy and plan discharge. When long-term psychotherapy is needed, patients are further referred to private-practice psychologists or psychiatrists; patients are informed from the beginning that we do not have the capacity for long-term treatment. Biannual neurology follow-up after discharge is routinely proposed. A close collaboration with the local pain clinic, psychosomatic medicine specialists, and rehabilitation hospitals allows referral of patients with comorbidities from somatic symptom disorders or those in need of prolonged inpatient integrated care.
Canada
On the background of a long history of experience with FMD at the Toronto Western Hospital Movement Disorders Clinic, a dedicated treatment program was started for this patient population. This is a tertiary referral center, with most referrals coming from community neurologists. The treatment program coincided with the recruitment of an academic neuropsychiatrist dedicated to motor FND. Prior to this, the role of the clinic was in diagnosis of FND and referral to community physiotherapy or neuropsychiatry within the same institution or instructions to the primary care physician to make a local referral for physiotherapy. In April 2018, an Integrated Clinic was started to develop an approach that replaced this referral-based model. In this clinic the patients are treated simultaneously by the neurologist, neuropsychiatrist, and physiotherapist in a rehabilitation-based model for six visits in biweekly, 45-minute appointments. All patients undergo a neuropsychiatric evaluation after diagnosis and prior to beginning therapy, reflecting an integrated approach.
To better understand the function and role of specialized FND clinics, we collected routine clinical practice data from these three national referral centers.
Methods
Retrospective data were collected from clinical records and notes. Details of data collection are presented in Table 1. Demographic and clinical data were for 492 consecutive patients referred to the three clinics over a 9- to 15-month period: 100 from the United Kingdom clinic, 302 from the Swiss clinic, and 90 from the Canadian clinic.
| Variable | United Kingdom | Switzerland | Canada |
|---|---|---|---|
| Opening of the clinic | September 2008 | October 2016 | November 2017 |
| Study inclusion criteria | Consecutive patients with a confirmed functional movement disorder (FMD) | Consecutive patients with suspected FND | Patients with FMD referred to neuropsychiatry |
| Study period | April 30, 2017–February 9, 2018 | November 1, 2016–February 1, 2018 | January 1, 2018–December 30, 2018 |
| Method of data collection | Chart review | Chart review | Chart review |
| Diagnosis assessment | 4 neurologists | 3 neurologists | 10 neurologists |
| Duration of neurological first assessment | 1 hour | 1.5 hours | 1 hour |
| Duration of neurological follow-up | 30 minutes | 1 hour | 30 minutes |
| Interdisciplinary follow-up | Depending on the treatment program, with a neurologist, a physiotherapist, or a neuropsychiatrist | Joint sessions of 30 minutes with a neurologist, then 30 minutes with a psychologist, and then 30 minutes with both together; independent individual sessions with a physiotherapist and an occupational therapist | Integrated clinic, with 45 minutes with a neurologist, a neuropsychiatrist, and a physiotherapist |
| Duration of interdisciplinary treatment | 5 days to 12 weeks, depending on the program | 3 months to a maximum of 6 months, with weekly physiotherapy and monthly joint sessions | 3 months, with biweekly visits |
| Network | Inpatient multidisciplinary rehabilitation, outpatient psychology and neuropsychiatry, day-case pain management program, 5-day specialist physiotherapy program | Pain clinic, psychosomatic medicine specialists, inpatient multidisciplinary rehabilitation in rehabilitation clinics | Community physiotherapy, outpatient neuropsychiatry |
Results
Demographic and clinical data are presented in Table 2. The mean age of the 492 patients was 44 years, and most (73%) were female. The socioeconomic impact of their health condition was notable, with a mean of 35% of patients not working because of ill health and 26% receiving disability benefits. In addition, a proportion of patients (10%–38%) needed a care provider for daily activities.
| United Kingdom | Switzerland | Canada | ||||
|---|---|---|---|---|---|---|
| Characteristic | N | % | N | % | N | % |
| Sociodemographic | ||||||
| N of patients in cohort | 100 | — | 302 | — | 90 | — |
| Age (M±SD) | 42.5±14.2 | 44±15 | 46±16 | |||
| Sex | ||||||
| Male | 20 | 37 | 25 | |||
| Female | 80 | 63 | 75 | |||
| Employment status | ||||||
| Paid employment (full- or part-time) | 19 | 48 | 23 | |||
| Retired or not working (nonmedical reasons) | 7 | 17 | 6 | |||
| Not working because of ill health | 39 | 25 | 40 | |||
| Student | 7 | 6 | 8 | |||
| Volunteer work | 1 | 0 | — | 1 | ||
| Unknown | 27 | 4 | 21 | |||
| Benefits and social help | ||||||
| Receives disability benefit | 34 | 15 | 28 | |||
| Receives unemployment benefit | NR | 4 | NR | |||
| Refugee | NR | 2 | NR | |||
| Assistance for personal care | ||||||
| Paid caregiver (social services funded) | 14 | NR | 1 | |||
| Unpaid caregiver (family or friends) | 24 | NR | 9 | |||
| No assistance needed | 37 | NR | 67 | |||
| Unknown | 25 | NR | 23 | |||
| Diagnostic | ||||||
| Final diagnosis of FND | 100 | 100 | 183 | 90 | 100 | |
| Motor FND (ICD-10-CM, F44.4) | 46 | 69 | 38 | 9 | 10 | |
| Gait | 18 | 20 | 11 | 6 | 7 | |
| Predominant weakness | 28 | 49 | 27 | 3 | 3 | |
| Abnormal movement (ICD-10-CM, F44.4) | 48 | 43 | 23 | 81 | 90 | |
| FMD tremor | 8 | NR | 15 | 17 | ||
| FMD facial symptom | 5 | NR | 7 | 8 | ||
| FMD dystonia | 5 | NR | 9 | 10 | ||
| FMD fixed dystonia | 3 | NR | 1 | 1 | ||
| FMD jerks | 3 | NR | 7 | |||
| FMD parkinsonism | 0 | — | NR | 1 | ||
| FMD chorea | 1 | NR | 0 | — | ||
| FMD mixed symptoms | 24 | NR | 42 | 47 | ||
| Sensory (ICD-10-CM, F44.5) | 0 | — | 19 | 10 | 0 | — |
| Psychogenic nonepileptic seizures (PNES) (ICD-10-CM, F44.6) | 0 | — | 23 | 13 | 0 | — |
| Mixed (ICD-10-CM, F44.7) (FMD+PNES) | 19 | 29 | 16 | 18 | ||
| Other | 6 | 0 | — | 0 | — | |
| Pain without motor symptoms on examination | 4 | NR | 1 | |||
| Dizziness without motor symptoms | 1 | NR | 0 | — | ||
| Parkinson’s disease with functional overlay | 1 | NR | 2 | |||
| FND with persistent pain as a significant problem | 79 | NR | 56 | |||
| FND with fatigue as a significant problem | 48 | NR | 47 | |||
| Duration and presentation of symptoms | ||||||
| Mean duration (M±SD years) | 6.7±6.1 | 4±6 | 7.4±8.1 | |||
| Median duration (years) | 5.0 | 2.3 | 4.0 | |||
| Paroxysmal presentation of FND symptom | 25 | NR | 29 | |||
a
FMD=functional movement disorder, NR=not reported.
The mean symptom duration was 6 years across all centers, with local differences: a mean of 6.7 and 7.4 years for the United Kingdom and Canada, respectively, and 4.8 years for Switzerland.
The clinics in the United Kingdom and Canada were set up specifically for FMD (including limb weakness). The Swiss cohort, which also included patients with nonconfirmed suspected FND, had greater diversity of dominant symptom, although 61% had a motor dominant presentation (weakness, 38%, and abnormal movement, 23%). Pain was common in the United Kingdom (79%) and Canada (56%), as was fatigue (48% and 47%, respectively). In the Swiss cohort, 39% received a primary diagnosis other than FND, and among them pain, fatigue, or another somatic symptom disorder were the main complaints (68%) (for further details, see Table S1 in online supplement ). Additionally, in the Swiss cohort, 13% were diagnosed as having psychogenic nonepileptic seizures.
Regarding treatment, of the 492 patients, 301 (61%) were offered physiotherapy, either alone or as a component of a multidisciplinary program: 48 (48%) of the 100 patients in the United Kingdom cohort (specialized physiotherapy following consensus recommendations [11] for 22 [22%] and within a multidisciplinary program for 24 [24%]), 39 (43%) of the 90 patients in the Canada cohort, and 214 (71%) of the 302 patients in the Swiss cohort.
Recommendations for psychotherapy were more variable. In the United Kingdom, 8 (8%) were referred for psychotherapy as a stand-alone treatment and 24 (24%) as part of MDT (total 32%). In Switzerland, 196 (65%) were referred for psychotherapy, either stand-alone or as part of an MDT program. In Canada, all patients were referred to neuropsychiatry, a proportion (N=11, 12%) of whom participated in the Integrated Clinic (for multidisciplinary treatment). Another 9 (10%) already had a psychiatrist, whom they continued to see for treatment of comorbid psychiatric conditions, not specifically for treatment of their FND.
Discussion and Lessons Learned
Lesson 1
FND is a syndrome with multiple comorbidities, and specialized neurological evaluation is useful for specific patients.
Because FND is highly prevalent (12), all neurologists need to be familiar with and effective at making the diagnosis, discussing it with the patient, and offering appropriate treatment. Local policies should be established to recommend which patients should be referred to specialized FND clinics.
One key role of FND clinics is to help resolve diagnostic uncertainty (13), especially in cases of co-occurrence of FND and other neurological disorders (particularly epilepsy and movement disorder). FND clinics can provide additional time and expertise for diagnostic explanation. This can be a useful service for patients who are uncertain about the diagnosis after initial neurological consultation (14, 15). Many patients seemed to hear a clear diagnosis for the first time in our clinics and often expressed relief, which highlights difficulties among neurologists in delivering the diagnosis (16).
FND clinics can also provide time and expertise to triage patients into appropriate treatment, paying specific attention to individuals with comorbidities such as fatigue and pain, which have a worse prognosis (17).
Lesson 2
A high percentage of patients require physical rehabilitation, and specialized services are needed.
More than half of the patients in this sample (61%) were offered physiotherapy (alone or as part of a multidisciplinary treatment), reflecting evidence that physical rehabilitation can be effective for a proportion of people with motor FND (18) without prominent comorbidities (19, 20). The practicalities of where and how this treatment is delivered are still a challenge, because some community- and hospital-based rehabilitation services may lack the necessary experience and resources to help patients with FND (21). Developing specialist allied health services for individuals with FND will help provide outreach and support to community services, thereby improving skills and confidence in treating persons with FND.
Lesson 3
Neuropsychiatric evaluation and treatment specific to FND are needed.
Triage to neuropsychiatry and psychology differed in the three clinics. The policy in the United Kingdom clinic is that neurologists ask patients about their psychiatric history and current mental health, but not all patients are referred to see a psychiatrist. This reflects the aim of trying to maintain efficiency within the service by avoiding a “one size fits all” pathway. Such flexibility in how treatment is delivered is important to optimize outcomes and engagement. Some patients who are initially reluctant or skeptical about psychological treatment may be more amenable after starting physiotherapy.
In Switzerland, a high percentage of patients accepted referrals to psychotherapy, which might be explained by three factors. First, the diagnosis of FND and the proposal to see a psychologist was made by neurologists dually trained in neurology and psychosomatic medicine (training in psychosomatic medicine targets mostly interpersonal communication techniques). Second, the patient was informed that the aim of seeing a psychologist was to start treatment (CBT-inspired therapy) and not to look for a psychiatric diagnosis that could explain the symptoms. Third, the psychologist was integrated into the team, and joint sessions were offered with both the neurologist and the psychologist to avoid the implicit message that the neurologist was “passing off” the patient to psychology.
In Canada, all patients accepted referrals to neuropsychiatry. Therapeutic delivery of a clear diagnosis by the neurologist, who also explained that the neuropsychiatrist was a clinic-affiliated FND treatment expert, likely facilitated this very high acceptance rate. Neuropsychiatric assessment and subsequent treatment involved framing of FND as a complex illness in which brain, body, and mind represent an integrated whole, readily influenced by internal factors and the outside environment, rather than a manifestation of a “psychological problem.” Psychiatric comorbidities and relevant psychosocial or physical stressors were appropriately managed but were considered perpetuating rather than causal factors for FND.
Integrated neuropsychiatric skills are needed for both diagnostic and treatment purposes (22). Referral to an external psychiatry or psychology facility reinforces a dualistic view that the condition is not neurological but rather psychiatric and increases the possibility of misunderstanding and poor uptake of potentially useful treatment.
Lesson 4
Earlier detection and treatment of FND are needed.
Patients with long illness duration (6 years) were seen in our clinics, and the illness had a high socioeconomic impact. Patients seen in the Swiss clinic tended to have a shorter duration of symptoms (median of 2.3 years), which may reflect inclusion of patients who were hospitalized in the acute phase of their symptoms, whereas the clinics in the United Kingdom and Canada saw only individuals referred as outpatients.
Patients’ understanding of the diagnosis was often poor, which may have contributed to the long duration of symptoms and illness (perpetuating factor). Even if it appeared clear from the notes that referring practitioners had already made and communicated the diagnosis, the patient had often not understood the diagnosis except in a negative way: “They told me it was all in my head.” A factor that may have contributed to patients’ negative impression of previous consultations is that many patients were not offered any treatment after diagnosis, which may have given them the impression that health care services did not believe that there was anything seriously wrong.
There is a need for FND clinics to work closely with acute neurology services or to accommodate early consultation for patients with recent onset of symptoms. Improving the way in which the diagnosis is communicated in the emergency department and implementing a liaison team from the FND clinic to see patients while they are in the emergency department could improve diagnostic understanding and help flag specific patients for treatment, which may improve attendance rates at FND clinics (8) or other treatments.
The data presented in this report have a number of limitations, including retrospective design, different inclusion criteria across centers, and treatment recommendations biased toward local availability and expertise.
Conclusions
Prospective and outcome data are needed to better refine the goals and understand the added value of FND clinics in international health care systems. However, our retrospective data and clinical experience suggest that specialized FND clinics integrated in neurology departments are needed and will help improve the clinical care of FND patients.
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Information & Authors
Information
Published In
History
Received: 2 April 2019
Revision received: 27 May 2019
Revision received: 24 June 2019
Revision received: 13 July 2019
Accepted: 16 July 2019
Published online: 7 October 2019
Published in print: Winter 2020
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Authors
Competing Interests
The authors report no financial relationships with commercial interests.
Funding Information
National Institute for Health Researchhttp://dx.doi.org/10.13039/501100000272:
Medical Research Councilhttp://dx.doi.org/10.13039/501100000265:
Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschunghttp://dx.doi.org/10.13039/501100001711: PP00P3_176985
Supported by the Swiss National Science Foundation (grant PP00P3_176985 to Dr. Aybek), a grant from the National Institute for Health Research (to Dr. Nielsen), and a grant from the Medical Research Council (to Dr. Edwards).Metrics & Citations
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