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Why MS relapse rates are underreported: What health execs should know


Two patient survey studies sponsored by Mallinckrodt reveal findings about patient-reported multiple sclerosis rates.

Patient-reported multiple sclerosis (MS) relapse rates may be higher than often thought, according to findings from two patient survey studies.

The “Multiple Sclerosis in America 2017” survey and a patient survey, sponsored by Mallinckrodt and conducted by Health Union and Harris Poll, respectively, reveal that MS relapse rates are underreported by patients. The surveys found that approximately one in every two patients experiencing a relapse do not always contact their healthcare provider during relapse. Additionally, the surveys identified areas of patient dissatisfaction with management of MS relapse .

There is limited understanding of the true prevalence of relapse, due to variability and limitations in published studies (designs, length of follow-up, recruitment criteria, etc.).

“The results of these surveys show that some MS patients are relapsing more often. It’s important to know that residual deficits may continue after an MS relapse and may contribute to the progression of disability,” says Tara Nazareth, director of Health Economics and Outcomes Research for Neurology and Nephrology at  Mallinckrodt Pharmaceuticals. “In addition, the surveys indicate that MS patients who are relapsing more often are contacting their healthcare providers during their relapses less often.”

According to the “Multiple Sclerosis in America 2017” survey, annualized relapse rates were observed as follows:

·      Less than one relapse per year (44.1%),

·      One to two relapses per year (35.5%), and

·      Less than two relapses per year (20.2%).

In those who reported relapse, 24.5% reported an average relapse duration of less than month and 12.9% were unsure.

Roughly three-quarters (74.8%) of respondents with a relapsing form of MS reported current use of disease-modifying therapy.

Greater relapse frequency was associated with less patient engagement of their healthcare provider during relapse. In addition, patients were more satisfied with both their healthcare provider and their overall treatment plan when healthcare providers’ follow-up occurred within one month of reporting of the relapse.

In the Harris Poll, patients who always reported suspected relapses were more likely versus those who did not to:

·      Strongly agree that their doctor 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%),

·      Seek treatment for their relapse (80% vs. 48%),

·      Be very satisfied with prior steroid therapy (39% vs. 17%), and

·      Be willing to be treated again with IV steroids (94% vs. 65%).

“Our findings provide valuable patient insights suggesting MS relapse rates may be higher than often thought, despite multiple maintenance therapies available.” Nazareth says. “Study results reveal a number of reasons why patients may not engage their healthcare provider during a relapse-they may think the relapse is not severe enough, be too busy, think their healthcare provider or treatment is unhelpful, etc. Timely and appropriate MS relapse management is critical, to avoid deficits that can lead to progression of disability and can impact the healthcare system at large.”

Next: Main takeaways



Managed care takeaways

The surveys also reveal important opportunities for improvement that managed care executives can consider. Such opportunities could include providing additional support to encourage healthcare provider-patient dialogue about MS relapse, additional venues for interaction, and additional MS relapse management options.

“Little is known about the types of patients who do not report MS relapse the detailed rationale and drivers behind such decision-making regarding when to seek formal care for MS relapse,” Nazareth says. “This research was critical in relaying the perspective of patients with MS in characterizing relapse and providing insights into patient-healthcare provider interaction. Research should also be done with providers to understand their perspective and areas for improvement within MS relapse management.”

Findings point to the need for greater patient-centricity in relapse management, which can start with health plan executives and extend to providers and patients, according to Nazareth.

Nazareth recommends three approaches for healthcare executives based on the survey findings:

1.     Provide more opportunities/incentives to facilitate relapse identification and relapse follow up.

2.     Provide resources and reinforce the need for healthcare providers to engage and educate patients on MS relapse on a periodic basis.

3.     Broaden MS relapse management policies to include  a wider set of options for relapse treatments (therapies for relapse resolution), services (e.g. rehabilitation, physical therapy, etc.), and healthcare provider-patient interaction and communication (telemedicine for patients not physically able to get to their physician).    



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