Rehab critical to quality of life
About 25 years ago when the idea of providing rehabilitation services for multiple sclerosis (MS) patients first surfaced, many providers didn’t see the point. Given that MS is a lifelong, progressive disease with symptoms that vary wildly from patient to patient, could rehab even make a dent? Would it be worth the expense and the effort? In the last five years, thanks in part to tremendous advances in the treatment of MS, physicians and therapists alike are answering those questions with a yes.
"We are much smarter about this now," says Nancy J. Holland, EdD, RN, MSCN, vice president of clinical programs for the National Multiple Sclerosis (MS) Society in New York City. "We know that the disease may continue to progress, but the point of rehabilitation is to help people function at their highest level, whatever their physical limitations are. It’s become increasingly more recognized that rehabilitation is important in the treatment of MS."
The MS Society wants to see rehab considered one of the primary interventions for MS patients. To that end, it recently completed a training kit for occupational and physical therapists who want to work with MS patients. The kit, which provides six continuing education credits, was mailed out to local MS chapters around the country in October. The MS Society also has convened a task force to write a consensus statement on rehab for MS patients. The goals are to encourage physicians to refer MS patients to rehab providers and to help patients get insurance reimbursement for rehab services.
"Reimbursement for rehabilitation has always looked at gain, moving someone to a higher level of functioning," Holland says. "With MS, if you look at the curve of the disease going down, if the line of function stays level, then it is a gain. But it’s a hard sell with the insurers."
Several MS treatment centers provide rehab, and a few general rehab programs are beginning to work with MS patients, says Deborah Hertz, MPH, director of medical programs for the MS Society. More physicians are referring MS patients to rehab, but it’s not enough. "We still need to get the word out that rehabilitation is a very important part of MS management," she says. "MS specialists are more in tune to the benefits of rehabilitation, but general physicians and even general neurologists are the ones we need to educate."
Besides the training kit, the society also provides videos, books, and articles that are specifically targeted at rehab professionals. Even simple interventions such as stretching, patient education, and gait training can make a big difference. "Rehab can have a dramatic impact on the quality of life of people with MS," Holland says. "There are some other conditions where rehab is important, like stroke, where the person will naturally improve physiologically over time in most cases. With MS, there isn’t always that physiologic improvement. The increase in function that the OT and PT can bring about can be very dramatic. Having someone who is walking one day and in a wheelchair the next is a tall order. The OT and PT can get a lot of satisfaction from helping someone adjust."
Many of the interventions therapists are accustomed to using for other types of patients also can be helpful for those with MS. "One of the problems, though, is that there aren’t enough occupational and physical therapists who really have expertise in MS." There’s no predictable course for the disease. "It’s episodic," Holland says. "The condition keeps changing, so the need for rehabilitation is ongoing, and the program will change as the symptoms change."
Therapists need to be aware of problems specific to MS patients that will impact the rehab program, such as neurogenic bowel and bladder issues, problems with speech and swallowing, and disabling fatigue. Between 75% and 95% of MS patients have such fatigue, and half say it’s their most troubling symptom, according to an expert opinion paper from the MS Society.
Physicians need to focus on coexisting medical conditions and medications, but rehab providers can step in to help patients manage weakness, spasticity, leg spasms, and bladder problems that could be contributing to the fatigue. Therapists also can teach activity modifications that will conserve energy.
These strategies are helpful even in the earliest stages of MS, Hertz says. "Rehabilitation is important at all stages of MS, not just as you progress in your disability. It’s key even at the beginning. You don’t have to have a severe disability to start rehabilitation." The problem is that newly diagnosed patients often don’t want to think about rehab, so health care providers need to push them to consider the benefits, she explains. "Rehabilitation is going to help patients remain independent and keep their functions so they can continue being active parents, stay employed, and have good relationships. MS affects so many different aspects of an individual’s life that the only way to really address all of them in a comprehensive way is through a rehabilitation program."
While the idea may make intuitive sense to therapists, there has been little in the way of clinical evidence to support MS rehab. A study published in the September issue of the Journal of Neurology, Neurosurgery and Psychiatry is one of the first to find a comprehensive rehab program improves patient outcomes. British investigator Jenny Craig, MD, and colleagues at the Walton Centre for Neurology and Neurosurgery in Liverpool, England, studied the combined effects of rehab and intravenous steroid treatment.1
"There is evidence to support both the use of intravenous methylprednisolone in MS relapse and physiotherapy in the management of MS, but no studies have investigated the combination of steroids and rehabilitation together," the authors wrote. "The experimental hypothesis was that steroid therapy for MS patients in relapse combined with focused multidisciplinary team care was more beneficial than steroid therapy alone."
Forty patients experiencing an MS relapse were given the standard treatment of steroids. Half also received multidisciplinary treatment including patient education, physical therapy, bladder management, and mobility aids.
After three months, the rehab patients had a much greater reduction in disability and were better able to walk and perform other motor tasks. Scores on the 60-point Guy’s Neurological Disability Scale improved by a mean of 8 points in the active treatment group and by 1.75 points in the control group.
"The findings suggest that introducing a problem-focused, team-integrated approach to the steroid management of MS relapse in the acute setting, including access to appropriate levels of therapy, is of benefit to patients in terms of motor function, disability, and aspects of health-related quality of life," the authors wrote.
A comprehensive approach
One rehab hospital that is getting in the MS game is The Institute for Rehabilitation and Research (TIRR) in Houston. A year ago, a neurologist referred an MS patient to TIRR, and the hospital’s community re-entry program decided to take the patient on, says Ellen Levin, PhD, clinical director of the TIRR Challenge Program. The patient needed a cane to walk and was suffering from mood and memory problems. But after a comprehensive approach including physical therapy, occupational therapy, cognitive therapy, and individual and group psychological work, she improved considerably.
"She became much more independent, she felt better emotionally and physically, and her endurance improved," Levin says. "It was a very successful experience for her, and it led me to believe that quite a number of people out there with MS could benefit from our program."
Because MS often strikes women in their childbearing years, there are additional family problems that must be addressed. "It doesn’t receive as much attention as it should," Levin says. "A lot of young kids have the responsibility of acting as caregivers for moms with MS, and that has a profound psychological effect on them."
Levin’s staff includes social workers, psychologists, and counselors who can help with such issues. That first patient TIRR saw had been forced to retire 20 years earlier than she had planned. "If she had been seen earlier in our program, I think she could have stayed employed longer," she says. "She was very career-oriented, and she had no preparation for losing her job. This type of situation compounds the psychological problems that come with MS."
TIRR could help a patient keep their job by working with the employer to institute modifications such as voice-activated computer equipment. "Companies are often amenable to talk about ways to accommodate employees. If we can’t help them with assistive technologies or strategies to combat cognitive problems, we can possibly help them find another job that would be easier to manage," Levin says.
TIRR staff members set out to educate themselves about MS and to plan an appropriate rehab program. Patients in the Challenge Program start off with treatment that lasts five hours a day, four days a week. As they begin to re-integrate into their roles in the community, the treatment time is reduced. But Levin isn’t sure that’s the best approach for MS patients. She’s considering adapting the program for MS patients who are already functioning at some level in the community, perhaps to a one- or two-day commitment. "We’re learning as we go. Not all patients can be served by this type of program," she says. "We’re still trying to figure out which patients can and how to alter our offerings to best serve them. With MS, you have a very diverse population. With each patient, it’s almost a whole new disease."
One of the hallmarks of the Challenge Program is dealing with cognitive impairment, which affects as many as half of MS patients. Problems include slowed information processing; impaired attention and concentration; impaired short-term memory; and reduced abilities in problem solving, planning, and sequencing. Physicians and even the patients sometimes fail to recognize the deficits. "A lot of MS patients are functioning, but not very well," Levin says. "Many are just getting by. Because a lot of the problems are cognitive and are not visible sometimes, there are a lot of attempts to hide them. It takes a lot of energy to hide a problem like that. We can help them accept what’s happening and teach them how to cope in spite of it."
An MS diagnosis brings with it a huge existential crisis, Levin says. "These patients need more than medications; they need to learn how to live in spite of this chronic illness."
1. Craig J, et al. A randomized controlled trial comparing rehabilitation against standard therapy in multiple sclerosis patients receiving intravenous steroid treatment. J Neurol Neurosurg Psychiatry 2003; 74:1,225-1,230.
Need more information?
Deborah Hertz, National Director of Medical Programs, or Nancy Holland, Vice President of Clinical Programs, National Multiple Sclerosis Society, 733 Third Ave., Sixth Floor, New York, NY 10017-3288. Telephone: (800) 344-4867.
Ellen Levin, Clinical Director, TIRR Challenge Program, 2455 S. Braeswood Blvd., Houston, TX 77030. Telephone: (713) 383-5608.