The Multiple Sclerosis Patient Journey - Episode 2
Frederick Foley, Ph.D., describes the psychological challenges that patients with multiple sclerosis face.
June Halper, MSN, MSCN: Dr. Foley, we’ve been working together for a long time, and when I first met you at the Albert Einstein College of Medicine MS Center, things were quite different. We didn’t have medications. We certainly didn’t have a center in New Jersey. Today the world of MS [multiple sclerosis] has changed and people’s journey has changed, but the psychological impact of MS probably has not. Is that your impression, or have things changed?
Frederick Foley, PhD: Well, the psychological challenges that patients with MS and their family members face are still the same as they were in the 1970s. There are some better treatments now, which is encouraging, but right from the beginning, adjusting to the diagnosis, adjusting to exacerbations, induces tremendous anxiety in many patients. Patients wonder, “Am I going to get better? What’s going to happen to me?” One of my patients described it as, “Living with the uncertainty of MS is like living with the sword of Damocles dangled over my head by that thin hair that can break at any time.”
Patients need to adjust to these huge changes that MS brings into their lives. Clinically significant depression is very common in MS, so the average person with MS has a 50% to 60% chance of experiencing a severe depression that we call a major depressive episode. In MS, for some reason, there is more depression than in any other central nervous system disease. Likewise, clinically significant anxiety occurs in 60% to 70% of people with MS. These are real problems that, fortunately, we’re getting better at treating.
Another major psychological symptom with MS is cognitive changes. Cognitive changes occur in 50% to 70% of people with MS, and adjusting and coping with these represents a major challenge to the person with MS and their family members. The cognitive changes that occur frequently aren’t readily observable, since language is frequently preserved. Someone could have very good verbal fluency, but be quite deficient in certain areas of cognition. All of these symptoms represent challenges that are ongoing to the person with MS and their caregivers and family members.
June Halper, MSN, MSCN: What modes of therapy do you find helpful in the normal world? We’ll talk about COVID-19 [coronavirus disease 2019] in a few minutes, but do you find group therapy, self-help groups or one-to-one, or does all of the above count?
Frederick Foley, PhD: All of the above count. Patients frequently become more isolated with MS and lose friendships, and their social circles narrow. We’re social creatures by nature. We need to have social networks, and so reaching out is important to get the support that the person with MS needs. Fortunately, there are better treatments for depression. Antidepressant therapies have been found efficacious, but we find clinically that we really have to push the doses up to the maximum frequently before we’re going to get efficacy in our patients with MS.
Likewise, a type of psychotherapy called cognitive behavioral psychotherapy has been found to significantly improve clinical depression and clinical anxiety in MS. It has been successfully applied now to certain MS symptoms, such as managing fatigue, managing insomnia, and also reducing the distress associated with chronic pain that occurs in MS. These are all relatively new treatments. We’re grateful that we’re continuing to work to find new ones.
June Halper, MSN, MSCN: Do you find that comprehensive care, because I remember we used to do a lot of team meetings like every other week, but do you find the team, somebody like Kathy, for example, who’s an OT [occupational therapist], do you find that members of the team help you and enhance your work? And how do you handle that in terms of keeping everybody informed and up to date, including the patient and family?
Frederick Foley, PhD: I’ve been grateful to be able to work in a comprehensive care center where we educate each other about things that we may not be aware of. For example, the physical therapist has taught me a great deal about physical therapy protocols and physical therapy for fatigue management. The OT has taught me a great deal about adaptations that the patient can utilize to improve their quality of life and their functioning. Of course, the neurologist has taught me a great deal about how to diagnose and treat MS with disease-modifying therapies and symptomatic medicines. And the nurses, the nurses are stalwart.
June Halper, MSN, MSCN: I’m glad you said that, Fred, absolutely.
Frederick Foley, PhD: They have the most contact with patients, so they are absolutely key to having decent comprehensive care. We all learn from each other, and it enhances patient care when we all know what the issues are.
June Halper, MSN, MSCN: I want to thank you all for watching and joining us at this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to the e-newsletter to receive upcoming information about other programs. I’d like to thank you all for the time and for this wonderful opportunity, and hope to see you all again.