MS comprehensive care in a changing clinical world


The concept of multidisciplinary care in multiple sclerosis (MS) began to take root decades before the first disease-modifying drugs arrived on the scene. In the 1970s and 1980s a handful of neurologists and nurses, faced with the complexities of a disabling, progressive disease, built practices exclusively for MS patients using a team approach.

At first hospital based and later outpatient based, the centers included, at the most basic level, a neurologist, a specialized nurse, and a physical therapist. Most soon came to integrate other types of practitioners – including urologists, sex therapists, speech pathologists and psychologists – as well.

Now called comprehensive care for MS, the multidisciplinary approach was formalized in 1986 with the creation of the Consortium of Multiple Sclerosis Centers, which has come to count more than 250 member practices in the United States. But a lot has changed in MS since then. Fast, precise diagnostic imaging and myriad drug options have resulted in a different path by which MS patients are managed, and far less disability in the patient population.

How has comprehensive care evolved since its beginnings, and is it still relevant? To learn more, this news organization talked with two pioneers in the field: nurse practitioner June Halper, MSN, APN-C, MSCN, the consortium’s director, and neurologist and author Randall Schapiro, MD, founder of the Schapiro Center for Multiple Sclerosis in Minneapolis, the nation’s longest-running comprehensive care clinic.

June Halper

Question: What did a multidisciplinary approach mean in the 1970s and 1980s?

Dr. Schapiro: It was a time when we all would have loved to manage the disease itself, but we didn’t have the tools to do it. We had to manage the symptoms, and MS, as its name implies, involves multiple symptoms. Every single person with MS is different, but in that era they all feared they would end up in a wheelchair. We had to manage the whole person who has the disease, and we felt the best way to tackle that was a team approach at clinics that looked at MS by itself, not in a batch of other neurologic diseases. There were already a number of MS clinics – every university had a clinic. But those had a strong research focus that we wanted to get away from in favor of the rehabilitative approach and the psychological approach.

Ms. Halper: The model of care in 1980, when I first started, was the comprehensive care team with the hub being the patient and family and the spokes being all the team working together. And you had the luxury of spending an hour with the patient to examine them, talk about their care, and provide them with education and referrals.

Q: How does it work today?

Ms. Halper: Today we’re keeping patients healthier and keeping more patients working, and so a lot of the attention is being paid to an infusion or pill or injection. Remember there was no MRI when we started. Today you diagnose patients within a few days, when previously it could take 6 months to a year. The focus with the younger generation is get them on a disease modifying therapy as quickly and appropriately as possible. What’s also changed is the time spent with the patient is different, and the issue of reimbursement has changed. Today the centers are expected to see something like 18 patients an hour. So a patient is seeing a nurse at the same time as a physician; nurse practitioners and physician assistants are doing more.

Q: If patients are less disabled throughout their disease course, does this mean comprehensive care is less important now than it was when it began? Do patients still need all the specialized services?

Ms. Halper: They need them in a different way. They don’t need as much rehab as they once did. There are still things like bowel and bladder management, and there’s a lot of mental health issues, a lot of education and more focus on wellness.

Dr. Schapiro: From an educational standpoint, comprehensive care is good for all patients with MS. But from a practical standpoint, if you're having more problems, comprehensive care is more for you than if you're having fewer problems. A lot of the specialists we once had in house are now referrals because not everybody needs everything. I don't think every patient who is newly diagnosed needs to see the physical therapist, for example. I don't think they all need to see the occupational therapist. Or have cognitive testing. I don't think they all need that, especially right away, because that'll just shock them. But they do all need education, and that’s something comprehensive care is very good at.

Q: Is the idea to keep patients with these practices all their lives?

Ms. Halper: Patients tend to stay with us over the course of their disease. With a comprehensive care center, you’ve got a team that can address the problems that arise when you have an illness that will not go away, will last a lifetime, and despite all the wonderful drugs we have today there’s still that Charlie Brown cloud over people’s heads – it’s always there and it’s very scary.

Q: How have the roles of the different core clinicians – the nurses, neurologists, nurse practitioners – changed in an MS center?

Ms. Halper: Nurses are doing all kinds of creative things. We have these programs to educate people, to do things online like yoga or meditation. Especially in the last year and a half a lot of the physical rehabilitation and exercise has shifted online. Many nurses have created programs that have expanded the concept of the Center Without Walls.

Dr. Schapiro: The role of the neurologist has changed too, in that now the neurologist isn't so involved in symptom management. I’m old fashioned; I think they should be. But they’re more involved in talking about the immune system and immune management, and the drugs that are available, instead of talking about how you're feeling and about what symptoms you're having. That said, the treatments don't come without their own set of side effects. Some of them, like the interferons, may exacerbate depression in individuals. The practitioner today must be aware of that and has to be tuned into that.

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Q: When the centers first started, they didn’t receive support from drug companies. They didn’t have things like in-house MRI, or infusions, to create revenue. There wasn’t yet the revenue from clinical trials. Now they have all this. Yet it seems you’re saying the model is hard to maintain because of insurance.

Ms. Halper: There is still a great need for comprehensive care. The question is who’s gonna pay for it. Insurance companies are not excited about paying for an hour and a half visit and lots of rehab. It used to be simpler because most people with MS were on disability; today they’re working and on private insurance. Yet their needs are just as great, because, if they don’t take care of themselves early on, they will pay the price later. The team approach to MS should be available to every patient at every visit if they need it. And it is good for physicians because it keeps them from getting burned out. But payment is a real issue.

Q: It seems that the definition of the comprehensive care center is changing.

Dr. Schapiro: Unfortunately, to run an MS center today financially, you must have income streams. Infusions became an income stream. MRIs are an income stream; research studies are an income stream. But still the bottom line, when you're trying to take care of patients, is you've got to take care of the disease, the symptoms of the disease, and the person with the disease. The other stuff is meant to support that.

Ms. Halper: Things have changed, but all in all, what I believe in, and I know Randy still believes in, is that people with MS require addressing all the problems that are related to MS.

Dr. Schapiro: That’s right. Managing MS is about disease management. It's about symptom management, and it's about person management. That's comprehensive care. And if you don't do all three of those things, you're really not doing comprehensive care.