Sunday, 20 March 2016

MS clinics give you more access to treatment

McKay KA, Tremlett H, Zhu F, Kastrukoff L, Marrie RA, Kingwell E.A population-based study comparing multiple sclerosis clinic users and non-users in British Columbia, Canada.Eur J Neurol. 2016 Mar 15. doi: 10.1111/ene.12990. [Epub ahead of print]

BACKGROUND AND PURPOSE:Much clinical knowledge about multiple sclerosis (MS) has been gained from patients who attend MS specialty clinics. However, there is limited information about whether these patients are representative of the wider MS population. The objective of this study was to compare incident MS cases who were MS clinic users to non-users of the specialty MS clinics in British Columbia, Canada.
METHODS:This was a retrospective record-linkage cohort study using prospectively collected data from the British Columbia Multiple Sclerosisdatabase and province-wide health administrative databases.
RESULTS:There were 2841 incident MS cases between 1996 and 2004 including 1648 (58%) that had registered at an MS clinic ('clinic cases') and 1193 (42%) that had not ('non-clinic cases'). Gender and socioeconomic status distributions were similar; however, non-clinic cases were older, accessed health services more frequently and had a higher burden of comorbidity than clinic cases. Only 1% of the non-clinic cases had filled a prescription for an MS-specific disease-modifying therapy, compared to 51% of the clinic cases.
CONCLUSIONS:Our findings have several important implications: even within a publicly funded healthcare system, a high proportion of individuals with MS may not access a specialty MS clinic; the needs of MS patients managed in the community may differ from those referred to an MS clinic; findings from studies involving clinic-based MS cohorts may not always be generalizable to the wider MS population; and access to population-based health administrative data offers the opportunity to gain a broader understanding of MS.
We had a coment from a blogger yesterday saying that they were newly diagnosed and was wondering if they would be eligble to get a certain MS drug. Looking at this report above it shows the advantage of being seen by MS specialists as people at MS clinics in Canada had more access to treatments

7 comments:

  1. Not only more DMT options, but MS centers provide easy access to various other services. For eg - social, rehabilitation, access to other medical professionals you may need to see for your symptoms. Also, the nursing staff has a good amount of knowledge about MS.

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  2. Why such a discrepancy? Do physicians at non-MS centers have a wait and see approach to DMTs? Or are they just not knowledgeable in MS therapies? I hope it is the latter.

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    1. In my Australian experience with clinic and non clinic neuros, it's both - the wait and see approach which I believe stems in part from lack of Ms specific knowledge/experience. From what I have heard from Australian patients, few non clinic neuros (in fact none to date that I have heard of) would be brave enough to prescribe a high efficacy DMd. Instead, in my personal and anecdotal experience,many Ms patients start off with a non clinic neuro in private system and eventually dissatisfaction with advice and medications leads them to explore other options and discover the existence of specialised Ms clinics. As the majority of non clinic neuros in aus cities are in the private system where their income is directly related to their client list, these non clinic private city neuros are unlikely to tell their Ms patients about the existence of specialised Ms clinics. Bojana

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    2. From my experience being a pwMS it can be both. Unfortunately some hospitals let junior doctors give the diagnosis of MS. Though NICE guidelines do say if MS is suspected the patient needs to be seen by a consultant neurologist. This is what I experienced. I had paralysis and the inexperienced junior doctor that lacked MS knowledge decided to write no medical examination notes! I should of been offered DMT at this appointment. I complained and his supervisor responded saying he left the hospital and sometimes neurologists don't get time to write any notes. This is b/s, there is a reason why medical notes are needed so there is a record of care that be passed on to the next doctor, also useful for legal purposes etc. This is something supervisors need to check junior doctors are doing.

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  3. First time blogger said

    Thank you for this. I am very lucky that where I live in XXXXXXXX (redacted), I have access to an MS clinic and the consultant I see is an MS specialist. It is worrying that so many do not. What can be done about this? Is it possible to make stricter guidelines saying if you are diagnosed with MS, it is vital to see an MS specialist? I assume if diagnosed with cancer for example, the patient definitely would see a specialist in whatever form of cancer they had? on MS clinics give you more acce

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    1. Re Is it possible to make stricter guidelines saying if you are diagnosed with MS, it is vital to see an MS specialist?

      Yes yes yes MD this needs to be done. The other problem is when I had a possible MS diagnosis I was informed until I get the definite MS diagnosis then I can't see an MS nurse due to funding. This is crazy, this is the time I really needed to see an MS nurse to ask questions, get support and assist with learning about MS to help self manage.

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    2. "I assume if diagnosed with cancer.... the patient definitely see a specialist" don't you believe it. I should publish my diary, it's a myth that cancer patients get priority.

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