An analysis of patient-reported outcomes (PRO) over a 10-year period suggests that physical impairment in MS patients with progressive disease is present before the perceived disease onset. This implies that an initial phase of the disease may be generally overlooked. This study supports the value of PROs as alternative outcome measures in MS.

Online registries offer the opportunity to streamline follow-up through large-scale, long-term, and cost-effective data collection. Registry data can be analyzed retrospectively to compare outcomes based on a particular exposure. Additionally, this type of data allows patients to get involved with research and offer a personal perspective on their disease, while allowing for home-based, cost-effective, and longer-term follow-up. Annalaura Lerede (Imperial College London, UK) presented prospective registry data analysis reflecting 55-year long disease trajectories, using only data from a 10-year period. The aim was to gather new insights into the evolution of physical disability across MS subtypes. Lerede focused on 2 PROs, namely the Multiple Sclerosis Impact Scale (MSIS-29) motor component, and the Multiple Sclerosis Walking Scale (MSWS-12), which measure general motor and walking abilities, respectively. A total of 15,976 MS patients in the UK MS Register provided data for this study. The records were analyzed by disease length (5-years bins) and by MS subtype: relapsing-remitting MS (RRMS), primary progressive MS (PPMS), secondary progressive MS (SPMS), and benign MS.

Results showed that PROs worsen over time in each disease subtype except benign MS (2% of the total population) and at each disease timepoint (P<0.0001 for both PROs). The average scores of all subtypes differed from each other (P<0.01) and disease duration had an association with PROs for all subtypes (P<0.001). PPMS and SPMS patients had notably higher (e.g. worse) PROs from the first year up to 10 years later. RRMS patients whose disease progressed within the 10-year follow-up also had higher average PROs from onset (P<0.0001 up to 45 years from onset).

Lerede noted that both PROs already reflect physical disability in all categories of patients before perceived MS onset. “These results suggest patients may be overlooking an initial phase of the disease.” She added that this work supports the value of PROs as alternative outcome measures in MS, and that PROs may be useful to study the MS prodromal phase.

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