NARCOMS Report–Regional Differences in Treatment Status
By Tuula Tyry, PhD, MAED, Narcoms Program and Editorial Manager–Barrow Neurological Institute, Phoenix, Arizona
Introduction
Diagnosis of MS can be complicated as there is no single, conclusive test for a clinician to use. Introduction of MRI techniques and the McDonald criteria have streamlined the diagnostic process, but it can still take several years before a suspected disease is confirmed. Among all the 31,761 NARCOMS Registry participants the average delay from the onset of symptoms to diagnosis has been 7.6 (+ 10) years. Even those participants who were diagnosed as recently as in 2006 reported an average delay of 6.6 (+ 8 years) years.
After the diagnosis of MS is confirmed it is important to keep in mind that disease activity in the central nervous system can continue in the absence of overt clinical signs of MS. Therefore, both the Consortium of Multiple Sclerosis Centers (CMSC) and the National Multiple Sclerosis Society (NMSS) have issued consensus statements regarding the importance of therapy intervention early on in the disease course (Consortium of Multiple Sclerosis Centers, 2005; National Multiple Sclerosis Society, 2006). Although their message is currently widely accepted among clinicians specializing in MS, the potential ramifications of delayed treatment of MS are still not universally acknowledged by all health care providers and payers. It is currently not known how differences in the level of community outreach and overall influence of the various MS clinics and research centers across the country affect local treatment decisions. This paper will briefly describe overall patterns in the treatment status of NARCOMS participants based on where they live and whether or not their health care has involved a clinic or center specializing in MS.
Use of MS Centers
In the spring of 2005 about half (48%) of NARCOMS update survey responders reported that they had received treatment or an evaluation at a MS clinic or center at some point during the course of their disease. At the same time, 58% of the responders reported at least one visit in the past 6 months to a neurologist specializing in MS, while an additional 19% had been seen by a non-MS neurologist and another 3% by a physiatrist or nursepractitioner. Most of the remaining 20% had visited their primary care physician. As seen in Table 1, the demographics and disability level of the patients having received health care at a MS clinic or center were quite similar to the rest of the responders. The percentage of participants with only Medicare and/or Medicaid coverage was slightly higher among those receiving care at a non-MS clinic (15% vs. 14%). The percentage of participants reporting no health insurance coverage was also higher (2% vs. 1%) although still quite low. Figure 1 demonstrates that the percentage of NARCOMS participants treated or evaluated at a MS clinic or center ranged between 46% and 55% when calculated separately for each of the four U.S. Census regions. The proportion was highest (54.2%) in the Northeastern region.
Treatment Status
In the spring of 2005 almost two out of three (63%) of the 9,533 NARCOMS update survey responders reported interferon, glatiramer acetate, natalizumab or mitoxantrone treatment within the past 6 months. A total of 64.1% of those having received health care at a MS clinic or center were treated with these agents and slightly fewer (62.6%) among those having received
health care elsewhere had been on any of these therapies within the past 6 months. Figure 2 provides a regional breakdown of treatment status based on type of clinic having provided health care for MS.
Although regional percentages are rather similar across the country, considerable differences were seen in the treatment status in smaller areas within each region. Furthermore, in some parts of the country (such as the Pacific division of the Western region, with or without Alaska and Hawaii) there is also a difference in treatment status between patients of MS clinics and non-MS clinics.
Conclusion and Future Directions
Selection and recruitment bias may account for some of the observed differences in treatment patterns in various geographic areas of the country. Nevertheless, potential geographic disparity in access to quality health care as well as incomplete dissemination of pertinent information warrant further research.
Promoting awareness of effective treatment options and regiment among general health care providers together with measures to improve health insurance coverage should remain primary goals for the MS community as a whole. The role of the patients themselves in seeking out the latest health-related information, however, has also become increasingly important. We applaud all of you who continue to take the time and effort to learn more about the disease and itstreatment. MSQR strives to provide useful information on current research findings directly to those affected by MS, including friends and family members. At the same time, we are well aware that the Internet has become a widely used health information resource for people with MS. One of the upcoming online surveys will be addressing the role of the Internet in more detail by investigating the current health information seeking patterns among people with MS.