When patients with multiple sclerosis (MS) are appropriately treated and their disease symptoms are under control, it is easy to think that their quality of life (QoL) is similarly improved. However, this is not always the case. “QoL in patients with MS is influenced by factors beyond pathophysiology and disease process, and is frequently at odds with objective measures of disease.” (Table 1) Conversely, “patients with a relevant degree of physical disability may continue to participate fully in life and consequently view their QoL more positively.”1
MS patients face “visible and invisible” issues related either directly or indirectly to their disease, which significantly impact QoL. They are often reluctant to discuss these issues, and healthcare providers frequently do not inquire about them.1
Impairments Start at the Moment of Diagnosis
After receiving the diagnosis of MS, many patients enter into a state of extreme distress, envisioning themselves incapacitated. This initial response often informs QoL of life by casting a hue of pessimism over the patient’s perceptions.1 These reactions can be mitigated by clinicians with an individualized approach that incorporates time, repetition, flexibility, and understanding, presented in a manner that is easily comprehensible to patients.2,3
It is important to present a “big picture view” that incorporates both the unknown and the known aspects of MS. Clinicians must walk a tightrope between encouraging patients to accept the disease, be socially and intellectually active, and live life to the fullest and informing them that some negative aspects of MS are unavoidable, and current therapies do not address all of them.1
Right after informing patients of the diagnosis, it may be difficult to broach specific topics that impact QoL, such as sexual function, fatigue, treatment adherence, depression, isolation, and cognitive decline.1 It is important for practitioners to inquire about these issues as the illness progresses.