Survey finds MS relapse is underreported

November 07, 2017
Two surveys suggest patient-reported multiple sclerosis relapse rates may be higher than thought. The surveys found that approximately one in every two patients experiencing a relapse do not always report it to their healthcare provider.
The first survey, “Relapse Prevalence, Symptoms, and Health Care Engagement: Insights from Patients with Multiple Sclerosis from the Multiple Sclerosis in America 2017 Survey” found that:
  • 46.9 percent of respondents with relapses said they always or often contact their healthcare provider during a relapse; 45.8 percent said they sometimes or rarely contact their healthcare provider during a relapse; and 7.3 percent said they never contact their healthcare provider during a relapse. 
  • Common reasons for patients not engaging their healthcare provider during a relapse were: relapse is not severe enough (57.9 percent), healthcare provider is unhelpful or didn’t tell me I should (30.9 percent), medications are ineffective or not well tolerated (25.6 percent), preference to manage alone (24.4 percent), financial or insurance barriers (16.1 percent), or had medication on-hand (10 percent). 
  • More frequent patient engagement of an healthcare provider during a relapse was associated with lower relapse frequency. 
  • In addition, patients were more satisfied with both their provider and their overall treatment plan when healthcare provider follow-up occurred within one month of reporting of the relapse.
The second study, “Understanding Patient Underreporting of MS Relapses: Insights from a 2017 Survey of Patients with Multiple Sclerosis” found that while most patients believe it is at least as important (if not more important) to treat relapses as their MS, half said they do not always contact their physician when they suspect they are experiencing a relapse. A majority of those who do not always report their suspected relapses cited their reason for not doing so as believing the relapse would resolve on its own and didn’t need to be treated.
Patients who always reported suspected relapses were more likely to:
  • strongly agree that their doctor has spent time educating them about the signs and symptoms that could indicate a relapse (54 percent);
  • state that it is very important to monitor for signs and symptoms of a relapse (83 percent), report symptoms regardless of severity (83 percent), and seek treatment for their relapse (80 percent); and
  • be very satisfied with prior steroid therapy (39 percent) and be willing to be treated again with IV steroids (94 percent).
The findings were presented at the Joint ECTRIMS-ACTRIMS Meeting in Paris, France.

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