Physicians and Patients Have Different Perspectives on Burden of Hidden Symptoms of Multiple Sclerosis to Patients

Background: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system with a variable clinical course characterized by neurological dysfunction and progressive disability. MS patients suffer from multiple manifestations that include not only physical symptoms but also hidden symptoms such as fatigue, depression, anxiety, and cognitive problems, which can be difficult to communicate, recognize, detect, and monitor.

Objectives: To identify areas of alignment and disconnect between patients and their providers on reporting symptoms and MS management.

Methods: This analysis was conducted using data from the Adelphi MS Disease Specific Program (DSP), an international, cross-sectional survey of healthcare professionals (HCPs) and their patients with MS between December 2020-June 2021. The patient’s MS symptom and management experience was reported by HCPs in a patient record form (PRF) and by patients in a self-complete form (PSC). Emphasis of analysis was placed on hidden symptoms. Full DSP methodology has been previously published.

Results: A total of 1052 matching PRFs and PSCs for patients with relapsing forms of MS were analysed. HCPs and patients were mostly aligned in their assessment of disease severity. HCPs reported 29% (n=300) of patients had very mild MS, and 23% (n=245) of patients reported having very mild MS.

Similarly, the reported numbers from HCPs and patients, respectively, were 45% (n=475) and 37% (n=384) for mild MS, 24% (n=251) and 24% (n=250) for moderate MS, but slightly different with 2% (n=26) and 15% (n=163) for severe MS. However, HCPs often underestimated the burden of hidden symptoms of MS in their patients. They reported 24% (n=254) of their patients experiencing feeling low/depressed but 67% (n=704) of patients reported feeling these symptoms. Disconnects were observed for other hidden symptoms such as, difficulty concentrating (10%, n=331; 67%; n=701), nominal aphasia (6%, n=62; 49%; n=522), mental fatigue (30%, n=325; 45%; n=470), and physical fatigue (43%, n=445; 54%, n=564), as reported by HCPs (PRFs) and patients (PSCs), respectively.

Conclusions: These results suggest that HCPs and patients are aligned in areas of disease management. However, there are disconnects in the reporting and understanding of hidden symptoms. This study highlights the need for an all-inclusive conversation between patient and HCP that incorporates both clinical and patient-relevant aspects of MS to optimize treatment and ensure that patient concerns and needs are being addressed.