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Multiple sclerosis
Original research
Contemporary study of multiple sclerosis disability in South East Wales
  1. Katharine Elizabeth Harding1,
  2. Gillian Ingram2,
  3. Emma Clare Tallantyre3,4,
  4. Fady Joseph1,
  5. Mark Wardle3,
  6. Trevor P Pickersgill3,
  7. Mark D Willis3,
  8. Valentina Tomassini4,5,
  9. Owen Rhys Pearson2,
  10. Neil P Robertson3,4
  1. 1 Department of Neurology, Aneurin Bevan University Health Board, Newport, UK
  2. 2 Neurology Department, Swansea Bay University Health Board, Swansea, UK
  3. 3 Helen Durham Centre for Neuroinflammatory Disease, Cardiff and Vale University Health Board, Cardiff, UK
  4. 4 Institute of Psychological Medicine and Neurology, Cardiff University, Cardiff, UK
  5. 5 Institute of Advanced Biomedical Technologies (ITAB), Department of Neuroscience and Imaging and Clinical Sciences, Multiple Sclerosis Center, Neurological Clinic, SS Annunziata Hospital, Università degli Studi Gabriele d'Annunzio Chieti Pescara, Chieti, Italy
  1. Correspondence to Dr Katharine Elizabeth Harding, Department of Neurology, Aneurin Bevan University Health Board, Newport NP18 3XQ, UK; katharineharding{at}doctors.org.uk

Abstract

Background A contemporary understanding of disability evolution in multiple sclerosis (MS) is an essential tool for individual disease management and planning of interventional studies. We have used prospectively collected longitudinal data to analyse disability progression and variation in a British MS cohort.

Methods Cox proportional hazards regression was used to estimate hazard of Expanded Disability Status Scale (EDSS) 4.0 and 6.0. A continuous Markov model was used to estimate transitional probabilities for individual EDSS scores. Models were adjusted for age at MS onset, sex and disease-modifying treatments (DMTs) exposure.

Results 2135 patients were included (1487 (70%) female, 1922 (89%) relapsing onset). 865 (41%) had used DMTs. Median time to EDSS 4.0 and 6.0 was 18.2 years (95% CI 16.3 to 20.2) and 22.1 years (95% CI 20.5 to 24.5). In the Markov model, the median time spent at EDSS scores of <6 (0.40–0.98 year) was shorter than the time spent at EDSS scores of ≥6 (0.87–4.11 year). Hazard of change in EDSS was greatest at EDSS scores <6 (HR for increasing EDSS: 1.02–1.33; decreasing EDSS: 0.34–1.27) compared with EDSS scores ≥6 (HR for increasing EDSS: 0.08–0.61; decreasing EDSS: 0.18–0.54).

Conclusions These data provide a detailed contemporary model of disability outcomes in a representative population-based MS cohort. They support a trend of increasing time to disability milestones compared with historical reference populations, and document disability variation with the use of transitional matrices. In addition, they provide essential information for patient counselling, clinical trial design, service planning and offer a comparative baseline for assessment of therapeutic interventions.

  • epidemiology
  • multiple sclerosis

Data availability statement

Data may be obtained from a third party and are not publicly available. Clinical data are held on PatientCare within NHS Wales on a secure limited access resource. For ethical and legal reasons, these data cannot leave this secure research environment. The statistical code and related information are available from the corresponding author.

http://dx.doi.org/10.1136/jnnp-2022-330013

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    Data availability statement

    Data may be obtained from a third party and are not publicly available. Clinical data are held on PatientCare within NHS Wales on a secure limited access resource. For ethical and legal reasons, these data cannot leave this secure research environment. The statistical code and related information are available from the corresponding author.

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    Footnotes

    • Contributors KEH designed the study, collected data, performed the statistical analysis and drafted the manuscript and is guarantor of the study. GI collected data and drafted the manuscript. ECT collected data and drafted the manuscript. FJ collected data and drafted the manuscript. MW collected data and drafted the manuscript. TPP collected data and drafted the manuscript. MDW collected data and drafted the manuscript. VT collected data and drafted the manuscript. ORP collected data and drafted the manuscript. NPR designed the study, collected data and drafted the manuscript.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests MW and MDW declare no financial interests. KEH reports speaker and personal fees from Roche, Merck and Biogen, and travel grants to attend educational meetings from Roche, Novartis, Merck and Biogen. ECT has received honoraria for consulting work from Novartis, Merck, Biogen and Roche, and funding to attend or speak at educational meetings from Biogen, Janssen, Merck, Roche, Takeda and Novartis. TPP reports honoraria from Roche and MedDay Pharma, travel expenses from Sanofi Genzyme and Novartis, and is Treasurer for the BMA. FJ reports honoraria and support to attend educational meetings from Biogen and Teva Pharmaceutical Industries. GI reports payments and honoraria for speaking, travel, and advisory boards from Merck, Sanofi Genzyme, Novartis and Biogen. VT has received honoraria, travel grants and research grant support from Roche, Merck, Biogen, Novartis, Viatris, Bristol Myers Squibb, Almirall, Sanofi.OP reports speaker fees, consultancy fees, and personal fees from Biogen, Sanofi Genzyme, Roche, Merck and Novartis, and grant support from Biogen and Sanofi Genzyme. NPR reports honoraria from Roche, Sanofi Genzyme and Novartis, and research grants from Novartis, Sanofi Genzyme and Biogen.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.