Closing the Gaps in Multidisciplinary SMA Care Coordination

This is a 2-part Q&A. Click here to view Part 1 of this conversation.

Multidisciplinary management has long been identified as central to treatment in spinal muscular atrophy (SMA), a rare autosomal recessive neuromuscular disorder caused by biallelic variants in the survival motor neuron 1 (SMN1) gene. Assembling the roster of specialties, however, is not the same as making them function as a team. Whether a neurologist, a pulmonologist, and an orthopedic surgeon can reach a shared plan during the visit itself, rather than across weeks of asynchronous notes, often determines what a patient and their family leaves with.

That difficulty compounds at the boundary between pediatric and adult care. As disease-modifying therapies extend survival and function, patients treated in pediatric neuromuscular programs are reaching adulthood in growing numbers. The receiving side may require not only an adult neurologist willing to take them on but an adult physiatrist, pulmonologist, and the rest of the team as well.

In the second part of a conversation with NeurologyLive^® in recognition of SMA Awareness Month, held annually throughout August, Alexandra Bonner, MD, a pediatric neurologist at Cleveland Clinic, discussed why she considers real-time communication the central challenge of collaborative care. She also talked about how bundling testing reduces the burden on families with limited time off work, and what a dedicated clinic coordinator makes possible. In addition, Bonner described how she identifies adult providers prepared to receive her patients, and why she does not step back from a transition once it begins.

In the first part of this conversation, Bonner discusses which specialties she considers non-negotiable on an SMA care team and how disease-modifying therapies changed the way her team plans ahead.

NeurologyLive: What are some common gaps or challenges that remain when coordinating care across specialties?

Alexandra Bonner, MD: Effective communication is perhaps not a gap, but always an area for improvement. It’s the biggest challenge that I think we face when we’re trying to provide care in a collaborative way. The care providers really need to be able to talk to each other and ideally be able to talk to each other in real time, during the time that you’re delivering that patient care. This way, we can move forward as a unit with each other and with the patient and their family.

That’s relevant both for specific complaints as they arise and for regularly scheduled follow-up care. If somebody comes in and they’re having a new complaint of shortness of breath, sure, I want pulmonology to see them and I want to get some pulmonary function testing. But if they’re in a growth spurt, I also want orthopedics to assess their spine and their thorax to see if there’s something musculoskeletal causing a restriction. They’re going to want me to say, “is this shortness of breath a marker of a more global functional decline? Do we need to adjust their overall pharmacologic treatment?” We need all of these people to be able to come together in real time, discuss that, and have a plan for the family.

The same thing applies when we’re trying to meet some of these screening guidelines. If we need a scoliosis x-ray now, and we need a dual-energy x-ray absorptiometry scan in 6 months, let’s keep that big picture in mind so we can bundle some of that testing and try to reduce the overlap. Bundle that care not just in what we’re recommending, but also in what the family is capable of. If they have capacity for 1 day off of work, what are we going to prioritize for that day to help make sure we’re taking the best care of this individual?

How can clinicians close coordination caps in multidisciplinary SMA care?

As for how we can best address that gap, I think multidisciplinary clinics, where we can all be in the same space at the same time, really allow for that timely and effective communication. But even that is complicated by many competing priorities. If the relevant care providers involved also have to cover hospital service and call, or attend conferences, or have personal responsibilities, then maybe you have a bunch of people in the same room at the same time But if somebody’s out every other month, then you’re losing that continuity with that care provider.

When I have seen it work most effectively is when there’s a good clinic coordinator. Someone who can understand the family’s needs, keep the providers on the same page, and manage a system of reminders and updates for everybody that’s involved. That’s when I see it work far and away the most effectively. But there are barriers to that as well, including administrative support and funding for that type of role. If we don’t have that person, the responsibility really falls to the individual with SMA and the families who are trying to coordinate all those recommendations, and to the providers who are also doing their best to get on the same page. It’s institution dependent what you’re able to achieve and how you’re able to collaborate.

As more patients live longer into adulthood, how have you approached the transition from pediatric to adult care?

That is extremely important, and also evolving as this care landscape evolves. As we have more therapeutic interventions, we are really reaching a stage where those of us as pediatric providers may or may not be comfortable just holding on to our patients in the same way that we have in the past. But you also need an adult provider who is ready and willing to understand the needs of a patient with SMA, and depending on where you are, you may or may not have an adult provider who has a lot of experience with SMA.

Again, collaborating and bundling as much as you can. Identifying, of your adult providers, who is the person who’s ready and willing to learn and work with you on what these new and emerging therapies are, and follow these patients longer term. But it’s not just the adult neurology provider. It’s also an adult physiatrist, an adult pulmonologist. It’s all of those. I often try to pinpoint the person who knows about motor neuron disorders. Maybe there’s somebody who works with patients with amyotrophic lateral sclerosis or other motor neuronopathies, and say, “okay, this is a good transfer of skills. We can utilize the knowledge, the contacts, the groups that you have”, and say, “I think this is a group who can help take good care of my patients.”

Then also not rushing the transition. Saying, “we’re going to get this patient to you, here’s our plan for the coming months, maybe we can do an intro meeting, but I’m not stepping back completely.” I’m still part of that care during this transition period, and keeping those lines of communication open can make a really big difference. I’m very fortunate here. Our pediatrics teams and our adult teams are housed in the same building, so it makes a world of difference when you can just pop up to somebody’s office and say, I’ve got this pediatric patient I want to tell you about.

Transcript edited for clarity. For more perspectives on the multidisciplinary care approach in SMA, click here to read our previous Q&A in this series.