Oct. 24, 2017
Amyotrophic lateral sclerosis (ALS) is a rapidly progressive motor neuron disease that attacks the nerve cells controlling voluntary muscles. Care of patients with this diagnosis often requires a multidisciplinary team that can include neurologists, physiatrists, pulmonologists, clinical nurse specialists or nurse practitioners, physical and occupational therapists, speech language pathologists, dietitians, psychologists, social workers, and case managers.
Mayo Clinic staff recognize that the disease burden associated with ALS makes traveling to multiple buildings for care and multiple-night hotel stays challenging for these patients and their families. So Mayo providers from across disciplines with ALS experience and expertise work with patients in one central location. To further streamline visits, patients with ALS may also complete necessary screening such as pulmonary testing and bloodwork at their home clinic before they travel.
When first implemented, the multidisciplinary ALS Clinic located on Mayo Clinic's campus in Minnesota saw patients once monthly, and the care team included an ALS nurse and providers from Neurology, Physical Medicine and Rehabilitation, and Speech Pathology. Now following more than 100 patients, the clinic operates one morning each week, and the team has expanded to include a dietician, swallowing therapist, social worker, a family and patient support group, and a representative from the ALS Association's member services. After the morning clinic ends, all providers meet to discuss the holistic needs of the patients.
According to Margaret A. Moutvic, M.D., lead physiatrist at Mayo's ALS Clinic in Rochester, Minnesota, the role played by physical medicine and rehabilitation specialists in caring for ALS patients is fairly broad. The physiatrist and other PM&R care team members strive to address multiple issues, including:
- Maximizing independent function for activities of daily living and mobility
- Minimizing fall risk
- Promoting appropriate exercise/energy conservation to improve quality of life
- Promoting safety and independence within the home and community
- Providing patient and family strategies for managing symptoms
- Helping patient and family members connect with available community resources
"Working collaboratively in one location with providers from multiple disciplines has allowed each specialty to address the different challenges that our patients experience in greater depth. Our physiatrists often spend time focusing on issues like bladder and bowel elimination problems, musculoskeletal pain, spasticity management, care coordination, and documentation for durable medical equipment," explains Dr. Moutvic. "If we take care of those elements, that allows our colleagues in neurology to focus on other aspects of disease progression, active research protocols and available treatments, and end-of-life issues."
Colleagues in Mayo Clinic's Department of Neurology agree that the one-stop clinic and integrated practice have been beneficial. "Having PM&R staff involved in the clinic has been essential for its success," says Eric J. Sorenson, M.D., a neurologist who led the development of the ALS Clinic and chairs the neuromuscular medicine section at Mayo Clinic's campus in Minnesota. "Other clinics have therapists but very few have PM&R physicians.
"Patients with ALS tend to go through this transitional phase that happens over time with their interests going from 'When will the disease be cured?' to 'How do I get through my day?' This represents a transition from the neurologist being the main provider to the PM&R physician being the primary provider. Working together on an ongoing basis makes this transition go more smoothly."
Because patients and families have expressed their appreciation for the ALS Clinic's convenience and support, ALS Clinic team members will continue to explore new ways to improve this patient-centered collaborative care model.