Patient Survey Studies Find Multiple Sclerosis Relapse is Underreported; Approximately Half of Patients Do Not Always Engage with Healthcare Practitioners During Relapse
"The surveys provide valuable patient insights that underscore the need for further education about MS relapse and its treatment," said
"Relapse Prevalence, Symptoms, and Health Care Engagement: Insights from Patients with Multiple Sclerosis from the Multiple Sclerosis in America 2017 Survey" [Poster P805] includes data of 5,311 patients with MS on the prevalence and characterization of MS relapse and HCP engagement during and after relapse. The annual survey was fielded online in the first quarter of 2017 by
- 72.2% reported having relapsing-remitting MS; 12.1% reported having secondary-progressive MS; 9.3% reported having primary-progressive MS; and 6.5% were unsure how to characterize their MS.
- Roughly three-quarters (74.8%) of respondents with a relapsing form of MS reported current use of disease-modifying therapies (DMTs).
- 73.1% of respondents reported experiencing at least one relapse in the past two years.
- Annualized relapse rates amongst all respondents were: <1 per year (44.1%), 1-2 per year (35.5%), and >2 per year (20.2%).
- 46.9% of respondents with relapses said they always or often contact their HCP during a relapse; 45.8% said they sometimes or rarely contact their HCP during a relapse; and 7.3% said they never contact their HCP during a relapse.
- Common reasons for patients not engaging their HCP during a relapse were: relapse is not severe enough (57.9%), HCP is unhelpful or didn't tell me I should (30.9%), medications are ineffective or not well tolerated (25.6%), preference to manage alone (24.4%), financial or insurance barriers (16.1%), or had medication on-hand (10.0%).
- More frequent patient engagement of an HCP 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 HCP follow-up occurred within one month of reporting of the relapse (both p<0.001).
Poster P805 Limitations
- Surveys reflect convenience samples, and are subject to participation bias and recall bias. Respondents may be different and non-generalizable to the MS adult population.
- Relapse was recalled over a two-year period. Relapses are more likely to occur over longer timeframes, so recoded one-year rates may be elevated.
- Validated scales/measures were not used throughout the survey; measurement properties were not formally assessed prior to use, leading to a potential lack of clear interpretability. Such challenges in conducting voice of patient research are not uncommon.
"Understanding Patient Underreporting of MS Relapses: Insights from a 2017 Survey of Patients with Multiple Sclerosis" [Poster P1267] highlights results from a survey of 250 adults (at least 18 years of age) with MS who had a relapse within the past three years. The survey, conducted online by Harris Poll on behalf of
- While most patients (91%) believe it is at least as important (if not more important) to treat relapses as their MS, half (51%) 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 (67%).
- Regardless of their relapse-reporting behavior, patients had a similar understanding of the common indicators of a relapse.
- Patients who always reported suspected relapses were more likely versus those who did not to:
- strongly agree that their doctor has spent time educating them about the signs and symptoms that could indicate a relapse (54% vs. 24%);
- state that it is very important to monitor for signs and symptoms of a relapse (83% vs. 51%), report symptoms regardless of severity (83% vs. 51%), and seek treatment for their relapse (80% vs. 48%); and
- be very satisfied with prior steroid therapy (39% vs. 17%) and be willing to be treated again with IV steroids (94% vs. 65%).
The posters with additional study details are available on the
ABOUT MULTIPLE SCLEROSIS
MS is a neurologic disorder that affects the central nervous system (i.e., the brain and spinal cord).1 An MS relapse, or flare-up, can bring new or worsening symptoms.2 Symptoms can include fatigue, balance/coordination issues, numbness or tingling, vision problems, muscle spasms, tremors and emotional changes.3
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