In the US, the MS centers to which some people with MS now go for their MS care are a relatively new phenomenon. My experience with them (in two moderate-sized cities) has been that the doctors in charge either aren't accepting new patients or don't accept Medicare/Medicaid patients. This means that those with MS who happen to be in a lower income bracket will be going to a neurologist who is probably not an MS "specialist," though what an "MS specialist" is isn't entirely clear to me. Is it a doctor who calls himself an MS specialist? Or are there criteria that have to be met--courses taken, numbers of MS patients treated?
The study below was done in Canada, where there is universal health care coverage. They found that older patients with MS, patients with more comorbidities, and patients not on an MS drug tended not to use an MS center.
It looks as if some of us have just learned to get along with our MS, without an MS clinic. It may also be that difficulties with transportation make getting to/from an MS clinic too difficult.
From PubMed, March 19, 2016:
Eur J Neurol. 2016 Mar 15.
A population-based study comparing multiple sclerosis clinic users and non-users in British Columbia, Canada
McKay KA1, Tremlett H1, Zhu F1, Kastrukoff L1, Marrie RA2, Kingwell E1.
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 Sclerosis database 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.
The abstract can be seen
here.