Multiple sclerosis is a complicated disease that requires treatment to address physical, emotional and mental health issues. A comprehensive model of care — with many health professionals taking a team approach — is considered the gold standard of care for patients.
But do all MS patients need to seek help at a comprehensive MS center? “MS comes in all levels of intensity and disability,” says Dr. Elliot Frohman, a professor of neurology and director of the (comprehensive) Multiple Sclerosis and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin. “If you’re mildly affected, accessibility to services may not be immediately required.”
A Team Approach
The comprehensive care model was established in the 1970s and became more common in the 1980s. It was born out of the different kinds treatment MS patients may need.
MS attacks the coating of the nerves (myelin), which results in damage and scarring to the spinal cord, brain and optic nerves. Patients may experience walking problems, extreme fatigue, cognition challenges (slowed thinking, poor memory), depression, anxiety, bowel or bladder incontinence, vision loss, sexual dysfunction and many other health issues.
It can be overwhelming to cope with the consequences of these physical, mental and emotional challenges at work, home or school. If your local neurologist doesn’t have a focus in MS or isn’t up to date on the latest treatments or research, you may wind up having to track down and patch together your own health team. Comprehensive care resolves that issue by putting many experts under one roof to provide a wide range of coordinated services.
[See: Which Practitioner Do I See, and When?]
Comprehensive Care Teams
A typical comprehensive care center may be located within a large academic research institution or in a private facility. Both centers have the same approach, with a physician who oversees services and a team of health professionals who collaborate in order to help you reach your treatment goals.
The team usually includes:
— Nurses who answer the phones and triage patients.
— Nurse practitioners or physician assistants who treat patients when they visit the center.
— Social workers who act as patient advocates. They can assist patients with problems regarding insurance, work, disability rights or medication costs.
— Physical therapists who help patients regain mobility.
— Speech language pathologists who treat swallowing problems as well as speech and cognition disorders.
— Occupational therapists who train patients how to adapt to physical or cognitive challenges.
— Psychiatrists or psychologists who treat mood and sleep disorders.
— Dietitians who ensure patients are getting the proper nutrition despite energy, bowel and bladder problems.
— Trainers who lead specialized exercise classes adapted for people with MS.
— Gynecologists or neurologists who treat MS-related bowel, bladder and sexual dysfunction.
— Neuro-ophthalmologists who treat MS-related vision problems.
Some comprehensive treatment centers even have experts who specialize in fitting patients with wheelchairs, custom leg or foot braces, beds or power-operated scooters.
Frohman says the benefit of the team approach isn’t just convenience. “Many centers are also engaged in research, and they make entry into clinical trials available,” Frohman points out. In other words, the center is following the latest treatments, and patients can get in on them.
When Should You Visit a Comprehensive Program?
While it’s helpful to visit a comprehensive program, you may also be able to find neurologists in your community who are knowledgeable about MS and are comfortable managing every aspect of patient care. “We have no issues taking care of MS patients,” says Dr. Ralph F. Gonzalez, a neurologist in private practice in Bradenton, Florida. “We use all kinds of therapies, from the original injectables to the newest infusions.”
Gonzalez doesn’t have an army of experts under one roof, but like other MS specialists in smaller communities, he’s developed a network of health care professionals who see patients for various MS needs. “We know and trust what they’re capable of, and we work very closely with them. They know my nursing staff, and we have an open line of communication,” he explains.
That’s not to say Gonzalez doesn’t refer patients to a comprehensive program. The closest one is 45 miles away. He’ll refer patients there to confirm a diagnosis or find out why a patient isn’t responding to therapy. “But as far as day-to-day treatment, I find it’s better to have local neurologists who can take care of MS patients, especially if you wind up in a hospital; you’ll have someone who knows you,” he says.
Frohman agrees — up to a point. “Once you have a patient who has more complex disease and has more parts of body function affected, it’s smart to think about a consultation with a large center, and have the team there look at the burden of disease,” he says.
[See: 10 Questions Doctors Wish Their Patients Would Ask.]
The Best of Both Worlds
Some patients prefer to receive care from both a local neurologist and a comprehensive MS program. “I see patients from all 50 states. They may come once and that’s it, or maybe we connect strongly and they come once or twice a year,” Frohman says. “We work well with their local doctors.”
Gonzalez has a number of MS patients who are also treated at comprehensive centers. “They are referred to us from the University of Florida or from the University of South Florida. They see us locally and go up to the other program every six months,” Gonzalez says.
What if you don’t live within driving distance of a comprehensive program? Virtual doctor visits via computer take care of that problem. “Last week I was on a house call with a patient and the whole family in Costa Rica,” Frohman says.
How to Find a Comprehensive Center
Beyond checking with universities and large hospitals, Frohman recommends using a center affiliated with the National Multiple Sclerosis Society. “It’s done a good job in developing criteria for care,” he says. The National MS Society has a program called Partners in MS Care that lists health care experts who meet the criteria, from comprehensive centers to neurologists and physical therapists. You can check it out online or call the local MS Society chapter to find a program or health expert who’s right for you.
For veterans, the Veterans Administration has a network of about 70 regional specialty MS clinics. They receive guidance from the VA’s two Multiple Sclerosis Centers of Excellence. “They are a national resource providing consultation on clinical issues, education, research and informatics across the country,” says Dr. Aaron Turner, co-associate director of research at the VA MS Centers of Excellence West in Seattle, and a professor in the department of rehabilitation medicine at the University of Washington.
[See: 10 Ways to Live Healthier and Save Money Doing It.]
Wherever you go for MS treatment, just keep in mind that the program should be right for you, with the latest and most effective treatments to help you manage your condition. “If you’re not doing everything locally and you want to consult and augment local care, I think that’s just smart,” Frohman says. “My hope is that most physicians would encourage patients to do that.”
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Should You Go to a Comprehensive MS Center? originally appeared on usnews.com