Prodromal Symptoms and Health Care Utilization in Pediatric Onset Multiple Sclerosis Prior to Diagnosis

Background: There is accumulating evidence to suggest the presence of a prodromal period in multiple sclerosis (MS). Prior population-based studies have shown that adults and children with MS use healthcare more than matched controls in the period before the first demyelinating event. Additionally, a variety of clinical symptoms, including autonomic, pain, fatigue, and psychiatric symptoms, have been shown to precede MS diagnosis by several years in adults. As of yet, there is limited data on prodromal symptoms in children with MS.

Objectives: We aimed to characterize healthcare utilization and identify and describe prodromal symptoms in the pediatric-onset multiple sclerosis (POMS) population in the two years leading up to MS diagnosis.

Methods: A total of 122 patients presented to the Pediatric MS and Demyelinating Diseases Center and Washington University School of Medicine and were screened from June 2011 to June 2021. 37 of these patients were diagnosed with MS, 24 of whom had electronic medical records available that were analyzed retrospectively. Data collected included symptoms -2 to 0 years before MS diagnosis and at time at MS diagnosis, and healthcare utilization -1 to 0 and -2 to -1 years before MS diagnosis. This included ambulatory physician visits, hospital admissions, and telephone calls to physician offices.

Results: Overall, these 24 patients had more healthcare utilization in the year immediately leading up to MS diagnosis (244 healthcare interactions) vs the year prior (96 healthcare interactions). In year -2 to -1, 19.8% of these interactions were neurology-related compared to 68.0% neurology-related interactions in year -1 to 0. Neurologic complaints included headache (58.3%), sensory (50.0%), visual (62.5%), motor (41.7%), and pain (41.7%) in the two years leading up to diagnosis. Common non-neurologic complaints included psychiatric, infection, dermatologic, and musculoskeletal. Only 2 patients (8.3%) did not utilize the healthcare system for a non-neurologic complaint.

Conclusions: Among our cohort of POMS patients, there was increased utilization of the healthcare system in the year immediately prior to MS diagnosis. This finding is consistent with prior population-based data. Moreover, we demonstrate that individuals with POMS present with a variety of neurologic and non-neurologic complaints - including psychiatric, headache, infection, sensory, pain, and motor symptoms - in the two years preceding MS diagnosis. This is similar to prodromal symptoms identified in the adult MS population but has not previously been shown in the POMS population.