Tuula Tyry PhD, MAEd–Program and Editorial Manager, Barrow Neurological Institute, Phoenix, Arizona

Introduction
A relapsing-remitting disease course is typical in most cases of multiple sclerosis (MS), especially during its early stages. Optimal treatment of each relapse (or exacerbation) depends on its severity and other factors as described in the lead article in this issue (see pages 6-11). Current treatment patterns and patient satisfaction with the various treatment approaches, however, have not been thoroughly investigated.

As most readers already know, we routinely include basic questions regarding relapse frequency and severity in the semi-annual NARCOMS update questionnaires. In the spring 2007 update survey, sent to almost 16,000 NARCOMS participants, we asked more specifically about relapse management and treatment satisfaction. Over 10,600 participants (67%) completed and returned the survey, either by mail or online. We conducted preliminary analyses after 9,800 responses had been entered into the database. This article summarizes initial findings and includes US responses only. More comprehensive results will be presented in various scientific venues in the coming months and will also be reported in a future issue of MSQR.

Relapse History
7,163 responders (73%) reported having had at least one relapse at some point of their disease course while 647 (7%) were unsure whether they had ever had a real relapse. However, almost 60% of those reporting at least one relapse in the past had experienced their most recent relapse within the past 2 years, including 2,435 (34%) who reported a relapse in the past 6 months. Recall of major medical events ooften is forgotten when the time interval exceeds 2 years. Figure 1 illustrates the distribution of time since the most recent relapse among those who were able to recall the exact year–about 10% of the responders indicated not being sure of the year or chose not to answer this question. The reported timespan since the most recent relapse ranged from a few months (28%) to over 20 years (less than 2%) and beyond–in some cases as far back as 50 years.

The average disease duration among those who had experienced at least one relapse in the past was 14.5 years (SD 8.9). 40% of them reported a total of less than 5 relapses over the course of their disease, 32% reported a total of 5 to 9 and 28% reported having had more than 10 relapses.

Relapse Management
2,597 (37%) of those reporting at least one relapse in the past had received care at a specialized MS center or clinic at the time of their most recent relapse. On the average, they were slightly younger (50.5 yrs SD 9.9) than the group that received care at a non-MS clinic (52.4 yrs SD 10.0). The average disability level did not differ between the groups (PDDS score 3.4 SD 2.3) and disease duration was also similar in the two groups (14.1 yrs SD 8.4 vs. 14.7 yrs SD 9.2).

Figure 2 illustrates the frequency of procedures taken by health care providers prior to treating a relapse. Multiple responses were allowed for this question. The most common procedures were examination by a physician, phone consultation and an MRI. Percentages for all procedures except for the CT-scan were higher at specialized MS-clinics, suggesting more comprehensive assessments.

Figure 3 demonstrates the location(s) where the treatment(s) was/were administered. The frequency of treatments taking place at the ER (less than 7%) and urgent care facilities (less than 2%) was similar in both groups. The somewhat higher percentages for treatment at doctor’s office, inpatient facilities and outpatient clinics among those receiving care at a specialized MS-clinic are likely associated with distinct differences in treatment approaches, which are illustrated in Table 1.

The main difference between the treatment approaches reported by patients receiving care at a MS clinic vs. non-MS clinic was in the percentage of relapses treated with corticosteroids rather than by observation only. At MS-clinics 60% of the relapses were treated with corticosteroids while 26% of relapses were under observation only. At Non-MS clinics the corresponding percentages were 44% and 40%. IV-immunologlobulins were also more frequently used at MS clinics (5% vs. 2%).

Treatment Satisfaction
Overall, patients treated at a MS-clinic were more likely to report a favorable treatment effect on recovery from their most recent relapse. 15% of them felt their recovery was much better because of the treatment, another 21% said it was better and yet another 20% reported a little better recovery as a result of the treatment. The corresponding percentages among patients treated at Non-MS clinics were 11%, 17% and 18%. Patients who received care at a MS-clinic were less likely to report no change in recovery as a result of their treatment (30% vs. 41%). Reports on unfavorable effects on recovery were at similar levels in both groups.

Follow-up and Referrals
As seen in Figure 4, patients receiving care at a MS-clinic at the time of their most recent relapse were more likely to have a follow up visit with a physician or a change in disease-modifying therapy than patients seen at a Non-MS clinic. They were also more likely to be referred for physical, occupational, and speech therapy. Interestingly, 27% of the patients receiving care at a non-MS clinic reported no follow-up visit or other action taken after their most recent relapse. The corresponding percentage among those treated at a MS clinic was only 12%.

Conclusions
The preliminary results reported above demonstrate how important it is that patients and their families have an opportunity to discuss and understand the various treatment options available. Seeking expert advice regarding rehabilitation and potential treatment plan adjustments following a relapse may be necessary for patients whose health care is not routinely monitored by MS-specialists.

This brief analysis also serves as a practical example of using the NARCOMS registry to gain insight in current clinical practice approaches and to identify specific areas requiring further study. As always, we want to express our sincere thanks to all registry participants for contributing their time and effort to facilitate MS research.

References
Campagnolo, D. & Vollmer, T. (2007). Treatment of Multiple Sclerosis relapses. MSQR, 26.4, 6-11.

This entry was posted on Wednesday, November 14th, 2007 at 9:25 am and is filed under All Articles, NARCOMS. You can follow any responses to this entry through the RSS 2.0 feed.