#ClinicSpeak: risk of relapse from delayed intiation of treatment

Nudge or name-and-shame? How do we reduce variability in the system? #ClinicSpeak #MSBlog

Earlier this week I mentioned that I was appalled by the observation that where you live in the country and how your local MS service is configured determines how quickly you can access DMTs. 

In one English town all patients had to be referred to a regional neuroscience centre taking on average 9 months to get onto a DMT, whereas in another similar-sized town with a local MS service patients managed to get onto treatment within 8 weeks. Does this make a difference? In this US electronic health record study patients who initiated DMTs later, i.e. > 3 months after being diagnosed with MS, were more likely to have a relapse than patients starting DMT within 3 months. Time matters!

Some people may say that as MS is a lifetime disease a short delay is neither here nor there in the grand scheme of things. I disagree. For every relapse their is ~10 white matter MRI lesions that occur asymptomatically. For every visible white matter lesion there is over 25 microscopic white matter lesions that the pathologists will see under the microscope. As we now know MS is as much a gray matter disease as a white matter disease how much activity are we missing in the gray matter. Therefore one relapse indicates that a lot more damage is occurring that meets the eye. This is why I continually push the issue of Time Matters in MS. It is also important to realise that once damage occurs in MS it is generally irreversible and that if recovery occurs it is due to plasticity and other compensatory mechanisms. Once we exhaust these recovery mechanisms worsening MS become clinically apparent (formerly known as progressive MS). 

How do we reduce the variability in the healthcare system when it comes to the management of MS? Do we name and shame units? Do we educate and help them? Do we ask patients to vote with their feet? Do we provide them with resources and know-how? Do we gently nudge them to change their local practice? There is no easy answer, but for the sake of people with MS we need to change the way we do things. Excessive variability in a system suggests something is wrong. Help!

Corvino et al. The association of timing of disease-modifying drug initiation and relapse in patients with multiple sclerosis using electronic health records. Curr Med Res Opin. 2017 Mar 20:1-14.

OBJECTIVE: A large, US de-identified electronic health record (EHR) database (Optum-Humedica de-identified Electronic Health Record dataset) was used to evaluate whether earlier disease-modifying drug (DMD) treatment initiation was associated with improved outcomes in MS.

METHODS: Newly diagnosed patients from 1/1/2008-8/30/2014 (International Classification of Diseases, Ninth Revision, Clinical Modification code: 340.xx; first MS diagnosis = index date) with healthcare activity 1 year pre- and 2-years post-index, and who initiated DMD treatment during the 2-year follow-up period, were included. Patients were categorized as Early or Late Initiators (initiated DMD treatment ≤90 or >90 days following index, respectively). Relapse was determined by the presence of an MS-related hospitalization or an outpatient encounter with MS diagnosis and corticosteroid prescription within 7 days.

RESULTS: A total of 4,732 patients met the inclusion criteria: 2,042 (43.2%) were Early Initiators and 2,690 (56.8%) were Late Initiators. Similar baseline mean age (46.9 years for both cohorts) and Charlson Comorbidity Index scores (Early Initiators: 0.3, Late Initiators: 0.32) were observed. Average time to treatment was 20.9 ± 27.6 days for Early Initiators and 346.3 ± 181.1 days for Late Initiators. A significantly higher proportion of Late Initiators (n = 609; 22.6%) had a relapse during the 2 years following MS diagnosis compared with Early Initiators (n = 403; 19.7%; p = 0.0158). After controlling for covariates using multivariable logistic regression, Late initiation of DMD treatment was associated with greater likelihood of relapse compared with Early initiation (odds ratio 1.189; 95% CI: 1.031-1.371; p = 0.0172).

CONCLUSIONS: Later initiation of DMD treatment (ie, >90 days after MS diagnosis) in patients with MS was associated with a greater likelihood of relapse compared with earlier initiation. Early initiation of DMD treatment following a diagnosis of MS may have an effect on long-term outcomes.

CoI: multiple

20 thoughts on “#ClinicSpeak: risk of relapse from delayed intiation of treatment”

  1. which justifies why I had to fight to start my DMT early on NHS. I had to make phone calls, write emails, complain and eventually I know those involved had enough of me. But I had to have access to DMT early and not wait for nothing just because the NHS bureaucracy dictates so.To those who have been recently diagnosed. You may be told you have to wait, but ask for your rights and insist on starting treatment asap.

  2. I was on my second relapse and had very severe symptoms. No doctor discussed DMT's, I had a diagnosis. I complained a few times and that didn't help. In the end the hospital complaints team decided to 'politely' put the phone down on me and not acknowledge my contact. Nice touch!Luckily I moved out the area, a different hospital and I'm on a DMT now.

  3. I bet that there are pwMS from outside the U.K. that relocate to London and get treated with DMTs before other recently diagnosed pwMS in other parts of the country that have paid national insurance their entire lives. That's what I would name and shame.

    1. You should do a little research before posting your unpleasant, evidence-free innuendo. National Insurance contributions have never had anything to do with access to NHS care, the only criterion is to be normally resident in the UK. And, if a handful of PwMS have relocated to the UK to gain access to a DMT, their legal status as residents is a matter for the Home Office not the Health Service.I suspect any investigation would cost far more than it would save and might mean more PwMS losing access to DMTs when they need them most.

    2. MS care is expensive and we need to ensure that access is fair. If you relocate to the U.K. for MS care then you are claiming a benefit for which you have not paid the premium. Claiming against any insurance policy for which you have not paid the premium, or have purchased in bad faith, is simply fraud. The NHS is a strategic resource, we need to make sure that is fairly distributed to those that paid for it. Am sure there are people that need DMTs outside the U.K. , but that is not the UK's problem. Why don't we give our enemies one of the Trident boats or aircraft carriers, since they need that the most? Also remember there is no reciprocity, when I lived in France, since I was over 28, I had no access to health care – I had to buy a plan.

    3. I was working in Germany when I fell over. The hospital would not treat me without seeing my EHIC card, I had broken a rib, punctured a lung and was in hospital for a week.Surely the NHS must move adopt a system that shows a person has been makinng a contribution towards the welfare system is needed. I guess this is a is a move towards a national ID card with the NI number as the identifier.I do have reservations but I can also see advantages of such a sysatem. It works in other countries, why not here?

    4. The NHS is not an insurance scheme so there are no premiums to pay, it is a government system set up to provide free, universal healthcare to the population of the UK. No tax or NI contributions are required to use the service – the only qualifying criterion is to be ordinarily resident in the UK. It is funded from general taxation which includes income tax, corporation tax, NI, alcohol duty, tobacco duty etc. Hypothecated taxes are rarely used in the UK as they are difficult to administer and chancellors like to retain the option to spend the pot as they please.From: https://www.gov.uk/guidance/nhs-entitlements-migrant-health-guide"Hospital treatment is free to people classed as ordinarily resident in the UK. This is not dependent on nationality, payment of UK taxes, National Insurance contributions, being registered with a GP, having an NHS Number, or owning property in the UK. To be considered ordinarily resident, you must be living in the UK on a lawful and properly settled basis for the time being – you may be asked to prove this."

    5. To put it into context: Why do we pay National Insurance? (BBC Newsbeat 2010)" What it is used for?The system has changed over the years.National Insurance is now used to pay for:•The NHS•Unemployment benefit•Sickness and disability allowances•The state pension "

    6. I would like to continue this conversation but this is not the correct platform to discuss how to maintain the NHS

  4. NHS will be dead within a generation. The Brexit trade deals will ensure that.The British are the worst for putting money aside in savings. 40% of UK citizens have less than £100 in savings. Start saving because the state is seriously withdrawing help.

    1. We need to pay more tax or you will be right, it is already being privatized by the backdoor and is being run into the ground.Some nurses were down graded (with a few days notice) last week giving them a 25% pay cut.They will leave, meaning more agency staff and extra cost to NHS.Its OK because they are getting new ones from the Phillipines.

  5. Is there any indication on the specific DMT? I would wonder if more apparently severe/active MS would get treated more aggressively and quicker. Since the article is talking about averages, it could be that we are skewing the population treated and the difference could be even larger? I would think breaking down the relapse rate by the medication choosen could help add color to this a bit.

  6. What I find interesting is the move away from the medical model. In Norway for example they are moving towards medication free treatment in psychiatry. I know DMT's are important for treating MS but for depression in MS and anxiety perhaps medication is not the only answer.

  7. Perhaps NHS Quality Checkers Programme visits should be done by neurology patients including pwMS? (patient experience-led inspection)"Quality checkers use their own experiences to assess the quality of care and support patients receive, giving a view that can be often missing from other forms of inspection" (england.nhs.uk) Could this improve patient outcomes of pwMS (including access to DMT's)?

  8. "For every visible white matter lesion there is over 25 microscopic white matter lesions that the pathologists will see under the microscope."So how could this relate to you NEDA hyphotesis?Obrigado

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