Brain Injury as a Chronic Disease: An Interview with Brent Masel, MD

Brent E. Masel, M.D. is the President and Medical Director of the Transitional Learning Center (TLC) at Galveston. Dr. Masel received his Medical Degree from the Loyola University Stritch School of Medicine and completed his post-graduate training from the University of Texas Medical Branch (UTMB). He is a Board Certified Neurologist. After 16 years of private practice, he accepted his position with TLC. He holds clinical appointments at UTMB in the Departments of Neurology, Internal Medicine, Family Medicine, Physical Therapy and Occupational Therapy. He has conducted research and published in the areas of brain injury rehabilitation and virtual reality, as well as hyperbaric oxygen treatment, sleep abnormalities, metabolic abnormalities, and hormonal dysfunction after brain injuries. Dr. Masel is the Past President of the United Way of Galveston, and serves on the Board of Directors of the TIRR Foundation, the North American Brain Injury Society, and the Brain Injury Association of America where he serves as the National Medical Director. He is the recipient of the Lifetime Achievement Award from the Brain Injury Association of Texas and the Innovations in Clinical Treatment Award from the North American Brain Injury Society.

What do you see as the major problems with current medical treatment of brain injury, and how would treating brain injury as a chronic condition improve the situation?

When I first wrote my paper (Masel & DeWitt, 2010) on the concept of brain injury as a chronic disease, Susan Connors (Executive Director of the Brain Injury Association of America) told me that I would become the “darling” of the plaintiff’s bar.¹ And although I certainly embraced the idea of being somebody’s darling, that certainly wasn’t the purpose. Brain injury is not being taught in medical schools. Both of my sons are physicians, and all they learned about brain injury was at my kitchen table. Physicians spend a lot of time in school learning about obscure diseases (especially neurologists like me) and yet we’re not taught about a medical condition like brain injury that every single medical specialist will encounter over and over. Chronic brain injury MUST be a part of every health care student’s curriculum.

Up to now, the overwhelming majority of basic science brain injury researchers have focused on the first 90 minutes after the injury in order to find something to stop the toxic cascade of events that lead to increased morbidity and mortality. It is clear, however, that there is another toxic cascade: slow, progressive, irregular and chronic, that becomes a part of the life of almost every individual with a brain injury. Bench scientists must be aware of this, and funding sources must give the scientists the support needed to address these issues.

I think the science of brain injury is where we were with the science of cancer awareness and treatment 50 years ago. With the appropriate education and allocation of resources, we can start talking about a cure.

Brain injury medical and rehabilitation providers usually like to focus on the positive. How would you respond if they object to reminding patients with brain injury that they have a chronic condition?

We should always focus on the positive. Nevertheless, if we are not honest about the issue, we do that patient an enormous disservice. No one likes to give bad news, but when that is our job, we should do that professionally and compassionately. My approach to practicing medicine has always been to picture myself or a loved one on the other side of the desk. What would I want to be told? Our approach to explaining the issues of chronic brain injury should be exactly the same.

Individuals with brain injury and their families may also object to thinking of brain injury as a chronic disease or condition. What would you tell them?

I hate to sound cold hearted but it is what it is. When we diagnose a cancer and explain it to the family and patient, we lay out the good and the bad. We tell them the various treatment options and the odds of having specific issues relative to the treatment and the prognosis of the disease. We give them our very best educated guess as to what the future holds — and what can be done to alter that future. An individual with a brain injury deserves no less. An informed educated patient and/or their caregiver is going to have the best potential possible outcome. There is unfortunately little that a patient with cancer can do to control their destiny. An individual with a brain injury can indeed alter many aspects of their disease.

Can you think of a particular patient in whose care you have been involved whose outcome would have been much improved by a chronic disease management approach?

I am aware of several patients with post-traumatic epilepsy who were “weaned” off their anticonvulsants by the family (because the patient was seizure free), only to later have major convulsions requiring emergency department evaluations. Proper education and disease management would have prevented this from occurring.

Would managing brain injury as a chronic condition be different for mild brain injury vs. moderate or severe brain injury?

Just as all cancers have different prognoses and treatments, as we all know, no two brain injuries are alike. The approach to an individual with a mild brain injury would be no different than with any other disease: here’s what we know; here are the odds; here is what science can do to improve your situation; and here is what YOU can do to improve the situation for yourself. Unfortunately, at this time, we don’t have a lot of knowledge about mild brain injury.

As a neurologist, how would your care of individualswith brain injury change if you had the financial support to treat brain injury as a chronic condition?

I really don’t think that my care would change much, although I might increase the frequency of follow-up. I would, however, become more of a case manager, and if allowed, would refer the patient for regular follow-ups with allied health personnel for evaluation and treatment to prevent decline. The recent ruling that the CMS must pay for treatment to prevent decline in the Medicare population was an enormous victory for brain injury.

Chronic disease management for other chronic conditions like asthma or diabetes usually emphasizes the role of patients and families in managing their condition. What are the roles for patients and families in managing brain injury?

As I mentioned previously, most medical professionals have very little knowledge and training in brain injury. Therefore, it is the educated patient and family who become the manager of the disease. One must understand the morbidities of chronic brain injury in order to prevent them. As an example, if one has spasticity, stretching must be done every single day — or it will clearly get worse — which then leads to more debility, becoming bedridden, and ultimately an increased risk for infections and early death. As health care providers, we can recommend, advise and admonish, but ultimately it is the responsibility of the patient and/or their caregivers to help prevent this from happening.

Providing chronic or lifelong care for brain injury will no doubt cost more and third party payers will try to find reasons not to pay. Their chief gambit these days is usually to demand an extremely high level of research evidence to support any practice change. How should medical care providers respond?

The data are there, and the numbers are irrefutable. As an example, 40% of individuals with a moderate-severe traumatic brain injury have neuroendocrine dysfunction. Shouldn’t everyone in that situation be screened and treated? To say that we shouldn’t treat someone with hypothyroidism from their brain injury because it hasn’t been proven to make a difference in “that population” is no different that denying them treatment for their diabetes or hypertension for the same reason. A key priority in our field is to establish treatment guidelines — even though those guidelines may be based predominantly on consensus. The truth is, that’s the way most medical guidelines as well as the standard of care ultimately are established. We should not be held to a different standard than the rest of the medical field. And we must use those guidelines to relentlessly pursue what is best for our patient.