Movement Disorders Moment: Comprehensive Care in Movement Disorders

The complexity of care for movement disorders is increasing rapidly. Medication options, new diagnostics, advances in genetic testing, and surgical treatments are expanding. Neurologists caring for people with movement disorders often take on the role of caring not only for the movement abnormalities but also for the multitude of other symptoms that accompany these disorders, including psychiatric complaints, cognitive changes, sleep disturbances, hypotension with or without orthostasis, impaired gut motility and constipation, and urinary issues. Furthermore, nonmotor features of movement disorders are often more predictive of perceived quality of life than motor symptoms in Parkinson disease^1,2 and Huntington disease.³

With increasing pressure being placed on practitioners to see more patients to improve access to care, a comprehensive care team for people with complex movement disorders is critical. Poor quality of life is associated with more frequent hospitalizations and substantial care partner strain.² However, people with movement disorders and their care partners often have difficulty navigating the growing number of services needed. What constitutes comprehensive care varies from individual to individual and within the same person over time. The Table shows a summary of the most common services that should be identified to help maximize care and quality of life.

Although not every person with a tremor needs to see a movement disorders specialist, evidence shows that, when evaluating for Parkinson disease and similar conditions, movement disorders specialists can help improve diagnostic accuracy; increase adherence to medications; address quality measures such as falls, depression, and hallucinations; and collaborate to improve treatment regimens to reduce adverse effects and improve quality of life.^4,5 As such, it may be beneficial for a person with a movement disorder to see a neurologist who specializes in movement disorders at least annually to help evaluate the overall plan of care.

Given the multitude of non-neurologic features of movement disorders, a primary care physician is essential to coordinate a person’s care as well as address immediate and long-term health needs, including age-appropriate screenings for cancer and other disorders, such as heart disease or kidney disease.

Depression and anxiety are common in people with movement disorders but often underrecognized. The neurologist should be comfortable assessing for these conditions, prescribing medications to treat the symptoms, and understanding the side effects (including attempting to avoid them or harness them for secondary benefit [eg, weight gain, sleep promotion]). However, when the symptoms are not easily managed or the patient has a complex mental health history, a psychiatrist with experience in neurologic disorders can help with medication management, improvement of coping mechanisms, and contribution to overall mental well-being of both the individual and the family.⁶ A neuropsychologist also may be able to help in these areas, as well as perform cognitive and behavioral assessments.

Appropriate ancillary therapies are a cornerstone of care for people with movement disorders. Physical and occupational therapy can help address fine motor skills, activities of daily living, walking, balance, strength, posture, and flexibility. Whenever possible, individuals should be referred to a therapist who has specialized training in movement disorders. Exercise instructors can help individuals maintain benefits from therapy and focus on key exercise elements, including aerobic activity, strength training, and balance. Individual sessions and group classes, such as in boxing, dancing, yoga, tai chi, and cycling, can help people maintain motivation to be active. A growing selection of in-person and online programs are available and may be covered by insurance or accessible for a low monthly cost. Speech therapy addresses changes in speech, including enunciation, projection, and intonation. A speech-language pathologist can recommend communication tools and provide swallowing evaluations, therapy, and dietary suggestions. Specialized training in speech issues commonly seen in movement disorders is preferred. A nutritionist or dietitian can provide detailed information about maintaining a healthy diet, meeting nutritional goals, and obtaining weight goals (ie, maintenance, gain, or loss).

Genetic causes and variants associated with various movement disorders are being increasingly identified, and treatments and trials specifically targeted to these mutations or variants initiated; therefore, the role of a genetic counselor is paramount. Genetic counselors can help discuss the impact of positive, negative, or ambiguous results on the individual as well as other family members. Genetic counselors can help individuals and families understand the factors that can influence family planning and refer people to reproductive specialists who understand their needs.

Given the wide range of services often needed by a person with a movement disorder, a social worker can help coordinate care, encourage resilience, and educate on coping mechanisms for people who may need additional support navigating their care or the health care system. Insurance navigators can help people manage the intricacies of transitioning insurances, applying for Medicare or Medicaid, choosing prescription plans, applying for disability, and maximizing their covered benefits.

Not every individual with a movement disorder will need surgical treatment, but establishing a relationship with a neurosurgeon who is well-versed in advanced surgical therapies (eg, deep brain stimulation, focused ultrasound, lesioning, retroperitoneal shunt placement) is an integral component of the comprehensive care model. Some clinical trials may require surgical procedures as part of the intervention. Additional medical specialties to whom patients may be referred include otolaryngology (eg, vocal cord dysfunction), cardiology (eg, tilt-table testing, pacemaker placement), gastroenterology (eg, gastroparesis, constipation, percutaneous endoscopic gastrostomy tube), urology (eg, frequency, dysuria, incontinence), or dermatology (eg, increased risk of melanoma in Parkinson disease). Palliative care and hospice also are important services in comprehensive treatment and to maximize quality of life.

Access to research and clinical trials, as well as advanced routes of medication administration (eg, intravenous, intrathecal), can help improve quality of life and reduce frustration for patients, care partners, and treating physicians. If these services are not provided by the practitioner’s facility, establishing a relationship with a location that provides them is important.

Physicians need to know how to create a comprehensive care team for their patients if one does not already exist. There are specific requirements to be met to receive designation as a Center of Excellence or Comprehensive Care Center, dependent on the designating agency. If components of a comprehensive care team are missing, they can be sought in the community or from other institutions. If not available locally, these components often can be provided virtually, allowing expanded access to important services without additional burden being placed on individuals and their care partners. Remote services, such as specialty neurologic care,^7,8 rehabilitation services,⁹ genetic testing, mental health services,⁶ care coordination, and insurance navigation, can allow individuals to round out their care while remaining in their community and with their medical team. Groups such as the International Parkinson Disease and Movement Disorder Society provide courses that include practical tools for development and improvement of comprehensive care models.¹⁰