Developing an Outpatient Transdisciplinary Functional Movement Disorder Program: 1‐Year Experience

Functional movement disorder (FMD) is the motor-dominant subtype of functional neurological disorder (FND), a common and disabling condition existing at the interface of mind, brain, and body. Patients experience various motor symptoms, including hyperkinetic movements, hypokinetic movements, gait disorder, and weakness.1 Approaching patients experiencing FMD with a biopsychosocial framework allows for the recognition of multiple risk factors, triggers of symptoms, and perpetuating factors.2, 3 Improved understanding of this condition has allowed for the development of therapeutic approaches. Evidence exists for multiple modalities, including motor-retraining/specialist physiotherapy, occupational therapy, speech-language pathology, multi-/interdisciplinary rehabilitation and psychotherapy, or combinations of these.4-10 Despite this, FMD remains undertreated and underfunded, with significant associated health-care costs.11, 12 FMD programs are rare, but advocacy and research have improved the recognition of the benefits of integrated care.13 The Calgary FMD Clinic opened in November 2023, providing assessment of patients with FMD, with the goal of developing comprehensive rehabilitation recommendations. Patients may participate in a 5-day intensive, outpatient, rehabilitation program.14 This is the first program of its kind in western Canada. The aim of this viewpoint is to share our clinical pathway and reflect on our first year, highlighting key challenges and lessons learned. The Calgary FMD Clinic is a 1-year transdisciplinary program based at a tertiary referral hospital in Calgary, Canada. The team includes 1 movement disorders neurologist, 2 neuropsychiatrists, 1 registered nurse, 4 physiotherapists, 3 occupational therapists, 2 speech-language pathologists, 3 social workers, 1 clinical psychologist, and 1 neuropsychologist. All services provided are publicly funded. Referrals to the FMD clinic are from ~75 neurologists (10 movement disorders neurologists) and 8 neuropsychiatrists for adult patients in southern Alberta with a primary concern of FMD who are open to the diagnosis and rehabilitation (Table S1). While awaiting their initial appointment, patients are invited to attend a virtual FMD education session led by neurology, physiotherapy, and clinical psychology. Aims of this session are to orient patients to the clinic and FMD, and encourage self-management strategies. The initial integrated assessment combines movement disorders neurology, neuropsychiatry, and nursing in the clinic room with the patient. Patients are asked to describe their bothersome symptoms, share their illness journey, and reflect on previous treatments.15 Neuropsychiatric assessment aims to develop a formulation for the patient's FMD and identify any relevant psychiatric treatment targets. The formulation helps identify factors perpetuating FMD symptoms and how to support their rehabilitation journey. Important goals of this visit are to characterize symptoms and function, evaluate their understanding of FMD, and assess their readiness to participate in an intensive rehabilitation program.16 The diagnosis of FMD is confirmed based on the presence of positive examination signs, and in rare cases where FMD is not felt to be present (n = 3), the patient is returned to his or her referring provider. The visit concludes with diagnostic discussion, education and development of a comprehensive plan, which may include participation in some or all aspects of our services, and/or community referrals. Patients self-register for a virtual psychoeducation group led by neuropsychology to improve understanding of the biopsychosocial underpinnings of FMD. Individuals who are triaged to our 5-day rehabilitation program begin rehabilitation within 3 months, which is built around their self-identified task-specific goals.14 A 6-week telephone follow-up visit after the program with physiotherapy is aimed at checking in on progress and reviewing skills. See Figure 1 for sample transdisciplinary management schedule, which is individualized to each patient based on their specific goals. Patients meet with clinical psychology to review skills and discuss relapse management. Patients are invited to participate in an Affect Regulation Therapy group program, which combines group discussion, neuroscience-informed psychoeducation, and emotional skills training (Table S2). Follow-up is offered to patients on a drop-in basis. Visits for relapses are with the clinic nurse to review tools for symptom management. Visits for new symptoms are with neurology to facilitate examination. Discharge visits are scheduled 1 year after the initial visit with patients who participate in services within our clinic. The goals of this visit are to review self-management skills for ongoing symptom improvement, identify any ongoing care needs, and refer to community resources. Patients are directed back to the referring physician with specific suggestions for management. In our first year, the FMD clinic received 192 referrals (170 accepted), and 104 patients attended their initial assessment. Patients presented with diverse phenomenology, commonly mixed or hyperkinetic movements (Table S3). Thirty-six patients were candidates for the intensive rehabilitation program, and 20 patients have thus far completed the intensive program, with fewer participants due to initial rollout. When patients were not candidates for intensive rehabilitation, a comprehensive rehabilitation plan was collaboratively built, which typically included referral to community resources and/or participation in affect regulation training/drop-in clinic. Rehabilitation participants (n = 20) experienced improvements in Canadian Occupational Performance Measure (mean performance: +2.9 [standard deviation, SD 2.1] and satisfaction: +3.9 [SD 2.4]), which evaluates changes in self-selected functional goals.17 Quality of life (EQ5D5L) also improved (mean + 10.2 [SD 17.6]).18 Participants (n = 15) described achieving their treatment goals (93% mostly or entirely agreed) and feeling they were involved in decisions about their care (100% mostly or entirely agreed). Often patients living with FMD have experienced invalidation and stigma. Integrated assessments with neurology and neuropsychiatry present together for the entire assessment destigmatize mental health supports, furthering the mind–brain–body connection. This style of assessment means that patients do not need to repeat their story and reinforces that both physicians are interested in their entire medical profile. Physicians align themselves to collaboratively build a rehabilitation plan. This helps reduce ambiguity and ensures clear communication. This process has also improved clinical acumen as physicians debrief and learn from each other in real time. Our program was developed with the aim of offering comprehensive rehabilitation, filling an unmet need. Clear referral criteria are necessary to ensure we are providing this service to patients at the right time in their illness journey, thereby promoting success in their recovery, while ensuring limited resources are well utilized and preventing team burnout. Practically, these are patients open to the diagnosis, interested in rehabilitation services, and without significant barriers to participation. This is in contrast to patients who may not benefit from our program due to their disagreement with the diagnosis, or symptoms interfering in intensive rehabilitation such as pain or fatigue, and are instead offered other individualized resources.16, 19 Despite careful referral criteria we have experienced long waitlists (6–9 months). Periodic review of referral criteria has been useful. We have implemented an “active waitlist” model, prioritizing patient education while awaiting consultation. When we receive inappropriate referrals, we feed this information with suggestions back to the referring providers. The drop-in follow-up model allows for visits to be timed to when most useful for patients given the variable improvement and unpredictable nature of FMD. We encourage patients to access this by providing them with details on how to request a visit and giving examples of reasons for these visits. These visits are spent exploring helpful skills, reflecting on success, and gently challenging perpetuating factors.20 Assessments require time to explore patterns of symptoms, potential triggers, and moments of improvement. Spending time listening to a patient's concerns is fundamental in building a trusting relationship. However, setting boundaries is also an important step in strengthening agency and avoiding dependence. This can be as simple as not immediately returning non-urgent phone calls, directing patients back to other specialists when appropriate, and setting agendas for discussions. Referring physicians will continue to provide care once patients are discharged from the FMD clinic. Therefore, communication is kept open with the referring physician. Our goal is to build a partnership, with patient discussions and questions in both directions. At the time of discharge, value is found in a “handover” regarding ongoing nursing support from an FMD lens. Similarly, we offer support/resources to nurses caring for patients before they are assessed in the FMD clinic. Our team of allied health professionals is tightly woven and utilizes a transdisciplinary approach to care. Overlapping roles with similar messages presented and applied in different ways allows consistent and repetitive reinforcement to the patient. Therapist handover of the patient's successes and challenges is prioritized to continue momentum from session to session. Prior to starting rehabilitation, patients attend a group-based education session aimed at increasing readiness for rehabilitation by developing an in-depth understanding of FMD, normalizing the patient's experience and introducing the importance of identifying specific goals in recovery. Education and goal setting encourage the patient to be an active participant in his or her therapeutic journey. Targeted task-specific goal setting allows for interventions to be more meaningful. As a team, our goal is to improve quality of life and support patients in building self-management strategies. The patient is continuously evaluated during the treatment week to reduce the risk of causing undue harm. When reflecting on those who did not improve during the therapy week, it has often been related to interference from preexisting active medical or psychiatric conditions. The decision to continue or prematurely stop the rehabilitation week is made as a team with the patient's well-being at the center. Many of our patients experience active psychiatric concerns, and addressing these comorbidities early enhances overall well-being and prognosis. Introducing patients to the biopsychosocial model early and using it throughout provides a framework that facilitates insight and self-agency. Through one-on-one discussion, patients develop an individualized understanding of why FMD happened to them and learn to use skills like breathing, imagery, and distraction to reduce symptoms. Through group discussion and skills training, patients gain further insight into internal and external triggers. Acknowledging stressors and learning to regulate emotions, as opposed to minimizing or avoiding, help improve outcomes. Health systems challenge our ability to provide care and can undermine gains. This includes pressure to discharge and use short-term/group treatments that are not effective for all patients, and difficulty coordinating and accessing mental health programs in a timely way. Patients often experience “segregated parallel therapies” rather than truly integrated care.21 Lack of control over system factors creates moral distress for providers, though celebrating incremental change has also provided hope. Despite the success of our first year, our team faces ongoing obstacles, including finding ways to grow our program, provide longer-term or inpatient rehabilitation, and provide support to patients with other FND subtypes. Our transdisciplinary program model for FMD has been successful in its first year, with important lessons learned. Our cohesive team has had success in patient outcomes, leading to health-care provider satisfaction in treating patients with FMD. (1) Research project: A. Conception, B. Organization, C. Execution; (2) Statistical analysis: A. Design, B. Execution, C. Review and critique; (3) Manuscript preparation: A. Writing of the first draft, B. Review and critique. G.S.G.: 1A, 1B, 1C, 3A; K.F.: 1C, 3A; J.S.: 1C, 3A; K.K.: 1C, 3A; M.B.: 3B; M.F.: 3B; N.K.: 1C, 3B; L.L.-S.: 3B; K.M.: 3B; L.M.: 3B; H.S.: 3B; P.V.: 3B; K.W.: 3B; M.H.: 3B; K.G.W.: 1C, 3A. We thank Jacqueline Townsend for her pivotal role in the initial development of our multidisciplinary rehabilitation program. We also wish to thank Dr. Sarah Lidstone, Dr. Lindsay MacGillivray and Haseel Bhatt from the Integrated Movement Disorder Program at the Toronto Rehabilitation Institute for sharing their experience in building their FMD program. Ethical Compliance Statement: The authors confirm that the approval of an institutional review board was not required for this work. Informed patient consent was not necessary for this work. We confirm that we have read the journal's position on issues involved in ethical publication and affirm that this work is consistent with those guidelines. Funding Sources and Conflicts of Interest: No specific funding was received for this work. The authors declare that there are no conflicts of interest relevant to this work. Financial Disclosures for the Previous 12 Months: G.S.G. receives research support from the Hotchkiss Brain Institute. K.F., J.S., K.K., M.B., M.F., N.K., L.L.-S., K.M., L.M., H.S., P.V., K.W., M.H., and K.G.W. declare that there are no additional disclosures to report. Data sharing not applicable to this article as no datasets were generated or analysed during the current study. Table S1. Calgary Functional Movement Disorder Clinic referral criteria. Table S2. Affect regulation training group program. Table S3. Phenomenology of patients seen in initial visit. Total is reported as count (%). FMD, functional movement disorder; FND, functional neurological disorder. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.

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