PERSIMS: Comparing doctors and patients PERSpectives on quality of life In Multiple Sclerosis

Advances in Multiple Sclerosis (MS) therapy have improved prognosis, but significant disability can still occur. Understanding the perspectives of doctors and patients on how MS and its treatment impact quality of life (QoL) is crucial. We aimed to explore the perceptions of MS patients and neurologists on MS symptoms, treatment, and their impact on QoL.

A cross-sectional online survey was conducted, targeting adult patients with MS and physicians experienced in MS care. Patients' quality of life (QoL) was assessed using the MS Quality of Life (MSQOL-54) scale.

252 patients and 53 doctors completed the survey. Relapses in the previous year were associated with lower physical (p = 0.026) and mental (p = 0.022) health scores. Being satisfied with disease-modifying treatment (DMT) and being involved in its choice were also associated with higher physical (both p < 0.001) and mental (p = 0.024 and p = 0.002, respectively) health scores; these scores were not different in patients under moderate versus high-efficacy DMTs (physical p = 0.582 and mental p = 0.180). Patients' and doctors' perspectives differ in what they value for QoL. Patients prioritized mental health (p = 0.024), while doctors focused on the impact of physical aspects on QoL (p = 0.030 and p = 0.004). Patients valued information about social support (p < 0.001) more than doctors and considered fatigue more challenging to discuss (p = 0.039), whereas doctors highlighted sexual dysfunction as difficult to address (p < 0.001). Doctors prioritized workplace adaptations (p = 0.041), while patients preferred faster access to healthcare to improve QoL (p < 0.001).

Incorporating patient-reported outcomes in MS care is essential to align treatment plans with patients' priorities and improve their QoL.