Maintaining the 'Human Touch' in Spasticity Care

In part 2 of this Q&A, Evi Arthur, Associate Digital Editor of the Neurology Learning Network, discusses spasticity management with Cindy Ivanhoe, MD, clinical professor of physical medicine and rehabilitation at McGovern Medical School at The University of Texas Health Science Center at Houston, Texas. In this interview, Dr Ivanhoe examines why she doesn't typically use oral medications for patients with spasticity, how to naviagate effective communication between clinician and patient, exciting new treatments on the horizon, and how not to lose "that human touch."

Catch up on part 1 of this Q&A: Tailored Spasticity Interventions Improve Patient Outcomes Across the Lifespan

This interview has been lightly edited for clarity. 

Evi Arthur, Associate Digital Editor, Neurology Learning Network: How can health care providers effectively communicate the risks of forgoing treatment to patients who may be reluctant to pursue intervention? 

Dr Cindy Ivanhoe, MD: Sometimes I'll tell people that I'm training, 'read the room. You don't want to overwhelm families or scare them to death so they don't want to come back. You want to meet them where they are.' There's a whole spectrum of how patients can present, from the totally dependent person who can't do anything and may not even seem like they're aware of what's going on to the ambulatory person who's going to school but still has the potential to do better. If a patient comes to you and says, ‘I'm really happy where I am. I don't know why they referred me to you,’ then I'll say, ‘okay, we don't need to do anything, but it is my job to tell you what your options are because maybe there are things you haven't considered.' You have to try and think or feel what that patient may be experiencing.

And then there's also the other issue of somebody who wants a treatment where they have to come every 3 months for injections and can't get there. Or somebody who takes off from work and they're in danger of losing their job because they're bringing their loved one to an appointment every 3 months.

To do it well and to be heard, you have to try and really understand that person's particular circumstances. Because they're dealing generally with a lot more than just if you're going to get them injected or if you're going to fill a pump. They're dealing with how it translates to the real world. And the other thing is to understand where they are with access to therapy. Understanding their personal circumstances and their needs and helping them understand what is possible under current circumstances. 

Arthur, NLN: What are the cognitive implications of oral medications commonly prescribed for spasticity, and how do these considerations influence the choice of pharmacological interventions in clinical practice?

Dr Ivanhoe: I am not a huge proponent of oral medications for my patients because, for the most part in the brain injury world, you don't get as much “bang for the buck” with medication and you can get more complications. And patients very often are already on a lot of medications from all their other physicians.

So, understanding how they feel and if the medications are really worth it is important. I have had more patients over my career where I've weaned their oral medications and they haven't noticed an improvement in their tone or their function, but they have noticed that they have more energy during the day. And maybe that is my bias, but I'm a bigger proponent of treating the spasticity or the hypertonicity where it is without having people add medication on top of medication. 

Now with that said, there will be patients who, for whatever reason, absolutely need to be on some of these oral medications even if it keeps them snowed. It may keep them easier to care for at home. They may be past a certain point, from their acute injury, where you've given up on how much more you're going to facilitate either consciousness or function or employability.

Again, I do find in my patient population that there are significant cognitive and fatigue implications to oral medications, and it's very rare that I prescribe any. It's a lot more common that I'm taking patients off of things that they've been given by other providers.

Arthur, NLN: What challenges do patients with spasticity face in accessing appropriate treatments, and how can these obstacles be addressed at both the individual and systemic levels?

Dr Ivanhoe: It is really hard to provide care right now to patients with disabilities. We used to provide care based on what was possible for a patient and what would improve their life. And now we provide care based on what's in a contract and what is a covered benefit. And that shortchanges people. My patients are, for the most part, variable degrees of disabled, but I feel like there's a larger gap that is forming between the haves and the have nots, which is really sad to see. There are people who could have a better quality of life if we weren't spending so much time trying to justify care. 

Finding people who see potential is becoming more challenging because as the generations progress, people that we're training are becoming more molded by the finances of health care than they are by the provision of great care. So it's changing the face of how care is provided, of what patients have to do to access care, of what clinicians and systems have to do to facilitate care. And a lot of people are burned out from it and they don't want to fight what I call the f word, which is funding.

Arthur, NLN: Could you discuss emerging or upcoming treatment options for spasticity and their potential impact on improving patient outcomes, especially in the context of brain injury patients?

Dr Ivanhoe: I think that remains to be seen. We have more upcoming things like cryoneurolysis, I think that there is a bigger role than people see to just combine all the different types of therapy. For example, a lot of people will say, ‘oh, that's my pump doctor. That's my injection doctor.’ I prefer to think of it as ‘we are a doctor for that patient and all these things fit together.’ I think that there will be, as people do jump through more hoops, more of a role and a larger education on cryoneurolysis, I think that there will be a bigger role for artificial intelligence, in ways that we haven't entirely thought of yet. And I think that there's a lot more that technology will be able to provide, I just hate to see us lose that human touch.

Cindy Ivanhoe, MD, is a clinical professor of physical medicine and rehabilitation at McGovern Medical School at The University of Texas Health Science Center at Houston, Texas. She is also director of Spasticity and Associated Syndromes of Movement (SPASM) at TIRR Memorial Hermann. Dr Ivanhoe is board-certified in physical medicine and rehabilitation and in brain injury medicine. She has served as faculty in courses across the United States and abroad and is known for her expertise in the treatment of spasticity and its role in functional recovery, medical complications of brain injury of all etiologies and severities, and as an advocate for healthcare access. Her nonprofit, IF (Ivanhoe Foundation) supports endeavors such as REEL Abilities, and others that serve to improve perceptions, opportunities, and lives of persons with brain injuries and other disabilities.