Disease perception impacts quality of life and fatigue in relapsing–remitting multiple sclerosis patients

Objective

There is little research on the relationship between self-concept, psychiatric symptoms and quality of life among multiple sclerosis (MS) patients. We assessed the impact of disease perception (expectation and knowledge) on these metrics according to time from diagnosis.

Methods

This was an observational, cross-sectional, multicenter study. Group 1 included patients up to 3 months from MS diagnosis, whereas group 2 included patients with MS diagnosis established for >12 months and <36 months. A 19-item true/false questionnaire developed by the investigators to assess disease perception, Hospital Anxiety and Depression Scale (HADS), Fatigue Severity Scale and three-level level version of EQ-5D questionnaires were used.

Results

A total of 90 patients from six centers were included (38 in group 1). A total of 80% had a good disease knowledge, whereas just 48% reported positive expectations. There were no differences in disease knowledge, disease expectations, HADS, Fatigue Severity Scale and EQ-5D. We found an inverse correlation between disease knowledge and problems in self-care (P = 0.018) and fatigue (P = 0.032). Patients with the worst expectations about the disease were more anxious (P = 0.012 on HADS and P < 0.001 on EQ-5D). They also reported more problems in mobility (P = 0.002), self-care (P = 0.005), usual activities (p = 0.009) and pain (P = 0.001), and a worst health status compared with the past 12 months (P < 0.001) and with the best imaginable status (P < 0.001).

Conclusions

Our study showed no association between disease duration and disease perception. Patients with less disease knowledge reported more problems in self-care and higher fatigue scores. Patients with the worst disease expectations were more anxious and reported a worse health status. More attention should be paid to perceived health status in MS patients.