Pearls From: Francois Bethoux, MD

— Rehabilitation therapy for MS faces many challenges


Rehabilitation may be an option for patients with multiple sclerosis, but insurance issues and the still-small (though growing) body of evidence have stalled its uptake. In this exclusive video, Francois Bethoux, MD, director of rehabilitation services at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, discusses those challenges and the growing support for exercise strategies in MS.

A transcript of his remarks follows.

I do think that rehabilitation strategies are underutilized in MS, and there are several reasons or explanations for this. One is the nature of the disease that doesn't really fit the traditional rehab model, but there's also the fact that people with MS have multiple symptoms including fatigue and they often have difficulty tolerating exercise. Physical exercises can often be the basis of rehab -- at least the physical therapy and occupational therapy part of rehab -- and if people have difficulty tolerating it, then even the therapists themselves, sometimes if they're not used to MS, may say, "Wow, we can't really work with this patient," or, "We can't really achieve the goals," because we can't put them through the exercises, the intensity, and frequency of exercises that we usually administer to our other patients.

There's also the fact that they are still not with therapists who are familiar with MS. MS is still a rare disease, compared to other conditions that require rehabilitation, and so it's logical that physical therapists and occupational therapists in the community who have not seen many MS patients, unless they are embedded in a MS center, like I am, or they have a close connection with a MS Center. And so it's not really part of the traditional curriculum to teach rehabilitation for people with MS or chronic progressive neurologic diseases.

It takes some education on all ends, but we also suffer from a lack of evidence, of more and more medicine, and rehab is no exception. It is really grounded in evidence. A recent review published by the American Academy of Neurology actually pointed out that there is a lack of good quality, high quality evidence. It doesn't mean that rehab doesn't work. It's just that it hasn't been tested enough, and so that is a detriment because then the practitioners don't have really strong evidence to base their practice on. What I mean is what groups of patients with MS would benefit more from this type of rehab versus that type? What kind of improvement can be expected over time?

It's not that there's no evidence. There's actually an exponentially growing body of evidence regarding exercise on the rehab in MS, but it has to reach the level that we have for other treatments and also address subgroups of people. We always say that if you see two patients with MS, even though what they have in common is the diagnosis, they will never present the same way. It's the same when you look at their rehab. We can't say, "Well, there is a typical patient with MS and this is how you typically do the rehab for them." There are definite rules that we apply, but then we have to adapt them to every person because there is a great heterogeneity in MS.

But in many, many cases, the referral would be to outpatient rehabilitation. In these cases, a majority of insurance plans have a cap on the number of sessions that can be administered, and they don't really buy into the concept of maintenance rehab, which is actually one of the most important functions of rehab in MS. Because sometimes it's a victory to preserve function over six months, or a year, or two years, in the face of a progressive disease. But as soon as a therapist cannot document progress, it usually means that the person is having a plateau and then that it cannot be justified to pay for more sessions. So, we have sometimes, or often, to wait until the person has lost more function to send them back to rehab, where it's actually more difficult in many cases to regain function, and so this is where the dilemma comes in.

Sometimes we're creative when we know that the person has a cap on the number of sessions per year. The rehab professionals will try to distribute these sessions so that the person can benefit. Because MS, obviously, doesn't go away after three months or after six months, so there may be a period where the person is seen more frequently, but then keeping some sessions for later.

But it clearly is an obstacle. Many rehab professionals and patients feel that while the course or rehab falls short, but since they cannot get more sessions covered, the out-of-pocket expense would be cost prohibitive basically for them, so then the rehab ends for that time.