National Early Inflammatory MS Audit
The care of pwMS in the UK remains a postcode lottery, and unless we have the data to expose the variance between the best and worst centres in the UK, very little will happen. Do you agree?
We in the field of multiple sclerosis have plagiarised concepts from other fields. Disease activity free (DAF) and treat-to-target come from rheumatoid arthritis. Preventing end-organ damage from renal medicine and diabetes refers to kidney and other organ functions. No evident disease activity (NEDA) is derived from no evident detectable disease (NEDD) that is widely used in oncology. Smouldering MS from smouldering myeloma, i.e. a slowly worsening disease that takes place over decades. This plagiarism is not surprising as therapeutic concepts are similar, no matter what chronically damaging disease you are managing.
One concept I so desperately wanted to copy was the use of national audit data to drive up the quality and standard of MS care. The idea was simple: create a simple-to-use national audit that would then expose the best and worst MS practices across the country and potentially the world, with the aim of raising the bar for all people living with MS.
This underpinned many projects I was involved in before COVID-19 and my accident. I had to withdraw from the UK-based ‘Raising-the-Bar’ initiative, which has yet to deliver on a national MS audit for all MS centres in the UK. Similarly, the quality improvement tool we developed as part of the MS Brain Health initiative is also looking for a home and a new young champion to take it on and create an international audit and dashboard to see how MS centres are doing when diagnosing and managing pwMS.
The paper below on the state of care of patients in the UK with rheumatoid arthritis (RA) makes me envious. Using data from the National Early Inflammatory Arthritis Audit (NEIAA) in England and Wales, these investigators have exposed regional differences in how RA is managed in the NHS. The data shows a 3-fold difference in RA remission rate between individual hospitals within regions. We would find the same in MS if we had a National Early Inflammatory MS Audit (NEIMSA).
As I have now moved into the twilight of my MS research career to focus on MS prevention, I would urge any young academic to take up the challenge to set up regional, national, and international audits and dashboards. The care of pwMS in the UK remains a postcode lottery, and unless we have the data to expose the variance between the best and worst centres in the UK and globally, very little will happen. Do you agree?
I suspect you, as pwMS, could start your own audit, i.e., create an online database and dashboard showing how good or bad your care is. I was also toying with this idea when I came up with msAdvisor based on TripAdvisor's review system. Would you be interested in this?
Objectives: Considerable data support early treatment of rheumatoid arthritis (RA) to obtain disease remission. Data from the National Early Inflammatory Arthritis Audit (NEIAA) in England and Wales suggest that, despite recent improvements in referral-to-treatment times, remission rates remain unchanged. We investigated reasons for this disconnect by evaluating temporal trends, geographical variation, and predictors of remission in individuals with new RA diagnoses.
Methods: An observational cohort study of individuals with RA was conducted using data from NEIAA (May 2018 - April 2024). Temporal and geographical variation in remission rates (DAS28 < 2.6) were explored using interrupted time-series and case-mix-adjusted mixed-effects regression. Predictors of remission were assessed using multivariable logistic regression.
Results: 13 752 of 21 904 (62.8%) individuals with RA had data on DAS28 at 3 months after initial rheumatology assessment, of whom 4,764 (34.6%) achieved remission. National remission rates were stable from 2018 to 2024; however, wide geographical variation was observed, ranging from 28.4% (London) to 40.3% (East-of-England). Three-fold differences in remission rates were seen between individual hospitals within regions. Younger age, female sex, Black ethnicity, higher baseline DAS28, delayed DMARD initiation, and longer symptom duration were independently associated with reduced odds of remission. Delays between symptom-onset and referral have increased since the COVID-19 pandemic.
Conclusion: While national remission rates for early RA have remained stable in England and Wales since 2018, there is marked regional and hospital-level variation, highlighting ongoing inequities in service delivery. Addressing factors beyond referral-to-treatment time-particularly delayed presentation to primary care-is required to improve remission rates.
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
The honest truth is that neurology is still in the dark ages regarding the understanding of the diseases this specialty covered. MS is no exception. Only last week I read a story in the sports pages of a 45 year old footballer (diagnosed 10 years ago) who had died of MS. On the MS Society website is a story of a woman in her early 20s who has advanced MS and lives in a care home. I find these stories both sad and shocking. 20+ expensive MS drugs yet they probably only slightly delay worsening disability. The real metrics for MS care are not is the neuro friendly or does the MS nurse respond quickly to emails, but did treatments keep you in employment until normal retirement age, did the treatments stop your disability from worsening…. The focus should be on getting treatments which stop disability worsening not just relapses. The we can worry about issues of equitable access to these treatments.
Good idea - I’m frankly astonished at the differing levels of care having moved and healthcare provided by a different trust. Still minimal access to neurologists but so many more and therefore much more access to MS nurses. However in this trust I have to travel over an hour to see my consultant and have an MRI and before it was 10 mins to the local hospital for both ( I have requested an MRI at local hospital 5 mins away which apparently is possible but seems to be an unusual request) Why does this happen?