An analysis of patient-reported outcomes (PROs) 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.
Online registries offer the opportunity to streamline follow-up through large-scale, long-term, and cost-effective data collection. Registry data can be analysed 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.
Ms Annalaura Lerede (Imperial College London, UK) presented a prospective registry data analysis reflecting 55-year-long disease trajectories, using data from a 10-year period . The aim was to gather new insights into the evolution of physical disability across MS subtypes. Ms 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 from the UK MS Register provided data for this study. The records were analysed by disease length (5-years bins) and by MS subtype: relapsing-remitting MS (RRMS), primary-progressive MS (PPMS), secondary-progressive MS (SPMS), and so-called ‘benign’ MS.
Results showed that the investigated PROs worsened 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 was associated 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).
Ms Lerede noted that both PROs already reflect physical disability in all categories of patients before perceived MS onset. “These results suggest that 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.
- Lerede A, et al. From the patient’s perspective: trajectories of physical worsening over 55 years in multiple sclerosis. Abstract O083, ECTRIMS 2022, 26–28 October, Amsterdam, the Netherlands.
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Table of Contents: ECTRIMS 2022
Letter from the Editor
ECTRIMS 2022 Highlights Podcast
Diagnosis and Prediction of Disease Course
A case for including optic nerve lesions in the McDonald criteria
Cerebrospinal fluid kappa-free light chains for MS diagnosis
Early, non-disabling relapses increase disability accumulation
Physical impairment is present before perceived MS onset
Chronic active MS lesions respond poorly to anti-CD20 antibodies
Treatment: Trials & Strategies
Dimethyl fumarate reduces the risk of a first clinical event in RIS
How and when to make a timely switch to high-efficacy DMT
Comparing real-world effectiveness of DMTs
Study fails to show non-inferiority of rituximab to ocrelizumab
Autologous haematopoietic stem cell transplantation versus DMTs
Stem cell transplantation not superior to natalizumab in progressive MS
Efficacy of DMTs fades away in secondary progressive MS
Smartphone tapping can help detect progressive MS
Early treatment with DMT effective in paediatric-onset MS
Fingolimod in paediatric MS: results of up to 6 years
Switching treatment after initial platform injectable DMT: real-world data
Pregnancy and infant outcomes in women receiving ocrelizumab
New safety data of anti-CD20 mAbs around pregnancy
MS activity and pregnancy outcomes after long-term use of natalizumab
Ravulizumab significantly reduced relapses in AQP4+ NMOSD
NMOSD patients are cognitively impaired regardless of serostatus
Evidence-based consensus on pregnancy in NMOSD
COVID-19 and MS: lessons learned thus far
Ocrelizumab and fingolimod increase the risk of COVID-19 and of worse outcomes
Humoral and cellular immune responses after SARS-CoV-2 vaccination
Re-myelination strategies in MS still pose many unanswered questions
MS associated with a broader Epstein-Barr virus specific T-cell receptor repertoire
Cognitive rehab and mindfulness reduce cognitive complaints in MS
Does fampridine improve upper limb function in MS?
Low-dose rituximab as effective as high-dose, but safer