Clinical and socio-demographic characteristics of people with multiple sclerosis at the time of diagnosis: Influences on outcome trajectories

Abstract

Background: It has long been accepted that multiple sclerosis (MS) is heterogenous regarding presentation and disease course, so that outcomes are diverse; however, there is less data on variation in the immediate period after diagnosis.

Methods: Our objective was to identify the clinical and demographic factors present at diagnosis. Two cohorts were compared from the Trajectories of Outcome in Neurological Conditions-MS study: those joining within one year of diagnosis (inception cohort) compared to 9-11 years following diagnosis (decade cohort). Patient reported outcome data were fitted to the Rasch model to yield interval estimates, longitudinal data were analysed by group-based trajectory models.

Results: The inception cohort (n = 813) showed impact on fatigue, disability, health status and quality of life (QOL), although as expected, less than the decade cohort (n = 679), who also had more depressive symptoms. The average trajectory of health status was deceptive, as analysis showed two distinct groups, 13.8 % having much poorer health status, sustained for at least 3 years from diagnosis. Similarly, there were distinct groups with different trajectories identified for disability and QOL. These groups varied for depression, anxiety, sleep problems, employment, comorbidities, smoking history, and deprivation indices, highlighting influences prior to diagnosis.

Conclusions: MS care must be personalised from diagnosis; service design should account for those people with MS experiencing poor health status from diagnosis. Basing capacity planning on average trajectories would be misleading. Furthermore, this evidence shows that service provision to support symptom management and disability clearly needs to be resourced from the diagnostic year.

Keywords: Multiple sclerosis; Newly diagnosed; Patient reported outcomes; TONiC-MS study; Trajectories.