Quality-of-Life Determinants in Multiple Sclerosis: Pearls From Practice
Quality of life (QOL) in patients with multiple sclerosis (MS) is influenced by disease progression and the level of disability, as well as individual patient resilience in the face of adversity. Additionally, the continuity of a solid doctor-patient relationship can have a great impact.
Chief Emeritus, Division of Neurology
“In psychiatry, there is an important distinction between the ‘being with’ and the ‘doing to’ nature of doctor-patient interactions. And being with patients who have MS is very important.”
Health is not merely the absence of disease but also a state of complete physical, mental, and social well-being. I was a psychiatrist before becoming a neurologist. As a psychiatrist, I saw that many patients had very low resilience, and things would happen that would derail them. When I switched to neurology, I witnessed catastrophic things happen to people without psychiatric comorbidity, and these patients often recovered quite well. In that respect, QOL can be a largely individual matter. One of the biggest indicators of how patients are doing is employment; for instance, if a patient is employed, they tend to be doing rather well.
There are several things that we can do to improve QOL in patients with MS. First, we need to make sure that we are not making patients sicker with our drugs. Depression is a major problem in patients with MS, and some of the older treatments (ie, the interferons) are known to cause depression and dysphoria. There are differences between fatigue and depression, and it is important to distinguish between the 2 of them in patients with MS. Fatigue is universal in MS, but it is not associated with self-deterring ideation or low self-esteem, whereas a patient with depression would have low self-esteem or self-destructive thoughts. If you decide to intervene for fatigue, you need to offer the right medications, which are not necessarily antidepressants. It is important to talk to patients about issues such as sleep disturbance because the treatment plan will vary with the cause.
Social workers can be very helpful in our attempt to improve QOL, but not every clinic has the luxury of having a social worker. The doctor-patient relationship can also be very important. When you go into a room as a doctor, you are taking on a major social role. For many patients, their doctor is a very important person in their life. Further, in psychiatry, there is an important distinction between the “being with” and the “doing to” nature of doctor-patient interactions. And being with patients who have MS is very important. We can also help patients avoid financial stresses and legal problems by referring them to the proper resources.
Additionally, I think that it is important to try to enhance the patient’s self-esteem. Losses of independence and bodily functions are sources of shame for many patients with MS. No matter how the patient is doing, it may be helpful to say something like, “You’ve got some really tough challenges here, but I’m impressed with the way that you’re handling yourself. You’re careful, you’re well dressed, etc.”
As doctors, we assume multiple roles when caring for patients with chronic diseases. We may feel like we are not doing very much for those with a chronic disease that is worsening, but patients do not want to feel abandoned, and having that solid relationship and continuity with their doctor is very important to them.
Al-Sharman A, Khalil H, El-Salem K, Aldughmi M, Aburub A. The effects of aerobic exercise on sleep quality measures and sleep-related biomarkers in individuals with multiple sclerosis: a pilot randomised controlled trial. NeuroRehabilitation. 2019;45(1):107-115. doi:10.3233/NRE-192748
Foschi M, Rizzo G, Liguori R, et al. Sleep-related disorders and their relationship with MRI findings in multiple sclerosis. Sleep Med. 2019;56:90-97. doi:10.1016/j.sleep.2019.01.010
Pérez de Heredia-Torres M, Huertas-Hoyas E, Sánchez-Camarero C, et al. Occupational performance in multiple sclerosis and its relationship with quality of life and fatigue. Eur J Phys Rehabil Med. 2020;56(2):148-154. doi:10.23736/S1973-9087.20.05914-6
Stuchiner T, Lucas L, Baraban E, et al. Quality of life among injectable and oral disease-modifying therapy users in the Pacific Northwest Multiple Sclerosis Registry. BMC Neurol. 2000;20(1):439. doi:10.1186/s12883-020-02016-4
Ysrraelit MC, Fiol MP, Gaitán MI, Correale J. Quality of life assessment in multiple sclerosis: different perception between patients and neurologists. Front Neurol. 2018;8:729. doi:10.3389/fneur.2017.00729