Editorial - Volume 24, Issue 4 - July 2022

We have just turned the page on the first fully in-person annual meeting of the Consortium of Multiple Sclerosis Centers since 2019; the 2022 meeting took place in National Harbor, Maryland, from June 1 to June 4. This opportunity to get together and brainstorm to advance the comprehensive care of multiple sclerosis (MS) was welcomed by the record number of professionals who registered for the meeting. We congratulate one of our editorial board members, Fred Foley, PhD, who was recognized during the first Giants of Multiple Sclerosis award ceremony for his landmark contribution to the understanding and treatment of mental health issues related to MS. During our annual editorial board meeting, we welcomed Christopher Luzzio, MD, as our newest board member, while we extended our gratitude to Eduard Gappmaier, PhD, and Susan Coote, PhD, who retired from the editorial board. Individuals with MS and their loved ones also attended this conference to participate in some of the scientific sessions and in the fourth annual More About MS patient program.

“Health is life lived in the silence of the organs,” wrote the French surgeon René Leriche in 1936. We have learned since then that health encompasses more than the harmonious functioning of body systems and structures. However, this quote evokes for me the image of persons with MS facing a cacophony of symptoms, daily living challenges, and life disruptions. Some of this “noise” is readily perceived by others, but much of it is hidden. Therefore, it is crucial to empower an individual with MS to be the main driver of the management of their disease. The systematic review by Kohler et al in this issue, for which continuing education credit is offered, deepens our insight into nursing interventions promoting self-efficacy in a rehabilitation context. This article echoes and complements the contents of the International Journal of MS Care (IJMSC) theme issue on shared decision-making in the management of MS, published in 2018, which can be accessed for free on our website. Altogether, I hope this body of evidence will entice clinicians and researchers to make new forays into integrating self-efficacy and self-management into the routine delivery of care.

Persons with MS express a strong interest in dietary approaches to the management of MS, yet they often bemoan an unmet need for information to drive their decisions. The qualitative study by Silveira et al focuses on the resources needed to empower persons with MS to make dietary changes. Empowerment efforts, dietary or otherwise, also need to be tailored to a person’s characteristics, including sex and gender. Davis et al found that traditional gender norms are associated with health behaviors and coping in males with MS, opening the door to a more personalized approach. Another way to empower our patients is to integrate as many relevant and important domains of life in patient-reported outcome measures. The 27-item Multiple Sclerosis Quality of Life Questionnaire, Blome et al, was developed using a rigorous process that included input from individuals with MS and health care professionals and includes items such as work and treatment side effects, while remaining shorter than many of the currently available quality-of-life scales.

How can we predict long-term disability in the context of MS? This question is at the forefront of preoccupations for health care providers and patients alike. The narrative review by Weinstock-Guttman et al, integrating input from an expert panel, suggests that combining measurements of body functionality and activity/participation limitations may lead to more accurate disability predictions. One factor that complicates the prediction of MS-related disability is comorbidity. There is now strong evidence supporting the impact of comorbid conditions on MS-related disability; however, this is a complex interaction that varies according to the nature of the comorbidity. In a secondary analysis of data from a 2-year randomized clinical trial of the supplement lipoic acid, Shangraw et al found no significant difference between participants with at least 1 vascular comorbidity or risk factor on several clinical, imaging, and optical coherence tomography measures, with the exception of worse baseline visual acuity in those with vascular risk burden.

In keeping with the impact of comorbidity, Cederberg et al noted associations between restless legs syndrome severity scores and performance on the Brief International Cognitive Assessment for Multiple Sclerosis battery. These intriguing findings entice future research to further assess the impact of restless legs syndrome and its treatment on cognitive performance.

I cannot resist the urge to leave our readers with another quote, this one from French philosopher Michel Foucault in his book The Birth of the Clinic: “The patient is the rediscovered portrait of the disease.” I found this quote particularly fitting to the mission of the IJMSC: We paint a portrait of MS and its management through articles on patient-related topics and through the cover art and related testimonials from persons living with MS.