According to a recent paper launched at the European-American joint event on multiple sclerosis, close to 60 percent of people with the disease do not always report their relapses to their healthcare practitioner.
In multiple sclerosis (MS), relapses can occur at a varied rate and frequency.
While some relapses might be a small annoyance that last a short amount of time, others can be devastating and last for months.
The paper concludes that people with MS, for a variety of reasons, are significantly underreporting their relapses.
Effects and reasons
In addition to physical harm, relapses can cause another underestimated problem.
They can place economic burdens on those who suffer from them by limiting ability to work, enhancing disabilities, and increasing medical costs.
Currently, there is no way to predict when a relapse will occur or how serious it will be for the patient.
Tara Nazareth, a lead study author and Health Economics & Outcomes Research (HEOR) therapeutic area lead, neurology and nephrology, for Mallinckrodt Pharmaceuticals, explained to Healthline that MS relapses are underappreciated and management is not where it could be.
“The research was eye-opening” for Nazareth, showing that “relapses were occurring at a higher rate.”
The number one reason why the majority of the patients did not reach out to their healthcare practitioner was because they felt the relapse was not severe enough.
Other reasons for not wanting to call a medical professional included intolerance for treatment, preference to manage the problem on their own, and financial barriers.
How the research was done
Nazareth worked with Health Union to develop the website where Health Union administered the survey.
Patients were responsible for their own responses. The survey was based upon patients choosing their own answers, not on a shared knowledge base with other patients.
Relapses are unique to each patient, so what defines a relapse for one patient may not work for another.
“Relapses are defined differently for every patient by their doctor,” Dr. Jaime Imitola, director of the Progressive MS Clinic at The Ohio State University, told Healthline. “Patients need to know how to define a relapse based on their own personal experience.”
Imitola strongly questioned the understanding of the term “relapse” in the survey.
“Do the patients thoroughly understand a relapse versus exacerbation of symptoms?” he noted.
Imitola emphasized how each patient needs a baseline to determine and define their own relapse.
He felt the spirit of the survey was right but had a problem with the limitation in the way the questions were designed and considered them biased.
How information can be used
The experts may not agree on the process of the research, but they do concur that the results show important information about relapses, patient/practitioner communications, and relapse resolution.
They want to know if patients are able to define a relapse, know when to contact their doctor, and then find resolution with treatment.
Communication between patient and practitioners has diminished, according to Nazareth.
There are vital pieces of information that medical professionals should know in order to prescribe better treatments to the patient.
These include the current state of affairs, what to learn about relapses, and when to engage with a healthcare practitioner.
“The voice of the patient has become a smaller piece of the dialogue,” Nazareth said.
“Our processes are very cookie cutter. This needs to change as we better understand different perspectives on relapses and break down the concept of lumping [them] together,” she added.
Imitola stressed the importance of the practitioner and patient relationship.
“The doctor needs to tell patients what to look for, when to call them, and then intervene when necessary,” he said.
Imitola added that some symptoms of MS are not related to disease progression. There is a difference between a relapse and exacerbations.
He described the difference between the short-term “MS weather” in a patient versus the long-term “MS climate.”
MS also marks patients in different ways and manifests differently.
“The best control in a study is the same patient over time, not different patients at one time,” Imitola explained.
Both parties agree that doctors need to always be improving their communications with their patients.
And patients need to ask questions and create a knowledge based upon their own disease activity and symptoms.