Comprehensive Approach to Management of Multiple Sclerosis: Addressing Invisible Symptoms-A Narrative Review

Abstract

Multiple sclerosis (MS) is a chronic autoimmune inflammatory disease of the central nervous system, leading to neurodegeneration and manifesting as a variety of symptoms. These can include "invisible" symptoms, not externally evident to others, such as fatigue, mood disorders, cognitive impairments, pain, bladder/bowel dysfunction, sexual dysfunction, and vision changes. Invisible symptoms are highly prevalent in people living with MS, with multifactorial etiology and potential to impact the disease course. Patient experiences of these symptoms include both physical and psychosocial elements, which when unaddressed negatively influence many aspects of quality of life and perception of health. Despite the high impact on patient lives, gaps persist in awareness and management of these hidden symptoms. The healthcare provider and patient author experiences brought together here serve to raise the profile of invisible symptoms and review strategies for a team-based approach to comprehensive MS care. We summarize the current literature regarding the prevalence and etiology of invisible symptoms to convey the high likelihood that a person living with MS will contend with one or more of these concerns. We then explore how open communication between people living with MS and their care team, stigma mitigation, and shared decision-making are key to comprehensive management of invisible symptoms. We recommend validated screening tools and technological advancements that may be incorporated into MS care to regularly monitor these symptoms, offering insight into how healthcare providers can both educate and listen to patients, with the goal of improved patient quality of life. By pairing clinical knowledge with an understanding and consideration of the patient perspective, providers will be equipped to foster a patient-centered dialogue that encourages shared decision-making. Invisible symptoms of MS.

Keywords: Cognitive impairment; Fatigue; Invisible symptoms; Multiple sclerosis; Patient experience; Shared decision-making; Stigma.

Fig. 1

Decision tree for addressing invisible symptoms as part of MS care. Addressing invisible symptoms begins with a clinical interview that prompts the person living with MS with questions about such symptoms. Screening tools may then be used to gain more information about the patient’s experience. The clinical interview and screening process may also help determine whether the person living with MS should be referred to a specialist

Fig. 2

Example patient experience discussing invisible symptoms with a provider

Fig. 3

Recommended framework for healthy living with MS for improved QoL. People living with MS can actively engage in the management of their invisible symptoms by taking steps to support overall physical and emotional health