Background

Detailed updated records from Multiple Sclerosis (MS) patient cohorts are crucial to obtain information on disease course and prognosis.

Objectives

To characterize the natural history of MS in a cohort from a Portuguese tertiary centre, comparing patients’ characteristics according to the first appointment date throughout 10-year spans (1987-1996; 1997-2006; 2007-2016).

Methods

In this longitudinal retrospective study we collected data about demography, diagnosis (date, EDSS, subtype), follow-up (duration, EDSS, subtype), relapses (initial symptoms, annualized relapse rate-ARR) and disease-modifying therapies (DMT). We conducted descriptive analysis to characterize the cohort and compared data between the three decades using Chi-square test, ANOVA and Kruskal-Wallis test.

Results

548 adult patients with relapsing-remitting MS were included, 73% female. Mean age at diagnosis was 34.0 years and mean disease duration 14.7 years. 5.7% of all patients had family history of MS. Eighteen patients had died. No significant differences were found regarding gender and age at diagnosis in patients from the 3 subgroups. The most common presenting relapses were supratentorial and spinal cord related. The median number of relapses between first and last appointment was 3, significantly higher in subgroups 87-96 and 97-06, although the ARR was significantly higher in the subgroup 07-16. The baseline EDSS was significantly higher in 87-96 decade and the percentage of patients achieving EDSS 3.0 and 6.0 significantly decreased since first decade. The mean time between EDSS 3.0 and 6.0 was 4.28 years, without significant differences in the 3 decades. The percentage of patients who converted to secondary progressive (SP) disease was significantly higher in 87-96 decade; the mean time to reach SP was 15.5 years, similar in all decades. The majority of patients started treatment with a first line DMT. The number of patients under a second line drug was higher for those included in the decades 97-06 and 07-16. Median time from diagnosis to first treatment was considerably higher for patients with first appointment in the 87-96 decade.

Conclusions

We document the natural history of MS in 3 decades, including 87-96 where DMT were not yet available, and found that patient’s demography remains similar. The higher ARR in last decade may reflect a better awareness of disease monitoring and differences in disability progression may be due to the impact of increasing DMTs.

Background

Little research has studied the relationship between self-concept and depressive and anxiety symptoms and quality of life (QoL) on Multiple Sclerosis (MS). Previous studies suggested that perceived health status and self-perception seems to be affected by disease duration.

Objectives

In this study, we evaluate the impact of receiving a MS diagnosis on disease perception (expectation and knowledge), depression, anxiety, fatigue, and QoL; and how these measures interact.

Methods

Observational, cross-sectional, multicentre study, with two matched groups.

Patients up to 3 months from diagnosis date were included in Group 1 and patients with diagnosis established for 12 to 36 months were included in Group 2. A 19-item true/false questionnaire developed by the investigators was used to assess disease knowledge and expectations. The remaining outcomes were assessed though: Hospital Anxiety and Depression Scale (HADS); Fatigue Severity Scale (FSS); and EuroQoL five-dimensional instrument (EQ-5D), 3-level version.

Results

We included 90 patients from six centres (38 in the Group 1), of which 80% had a good disease knowledge whereas only 48% reported positive expectations. No differences were found between groups in demographic and clinical data. There were also no differences in disease knowledge, disease expectations, HADS, FSS, 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 worse 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), having a worse health status comparing the last 12 months to the best imaginable status (p<0.001).

Conclusions

Our study showed no association between disease duration and disease knowledge, disease expectations, depression levels, anxiety, fatigue, and perceived QoL. Patients with less disease knowledge reported more problems in self-care and higher fatigue scores. Patients with worse disease expectations were more anxious and reported a worse health status. Our findings suggest that more attention should be driven to perceived health status and to depressive and anxious symptoms in MS patients.