MS Relapses May Be Significantly Under-Reported. Duh.
This comes as no surprise to me and probably not to you.
MS patients may not always contact their healthcare providers when they’re having a relapse. This information comes via a pair of surveys that were released at the recent ECTRIMS-ACTRIMS conference in Paris.
- 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%).
- 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%).
- Patients who always reported suspected relapses:
- 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%).
Both of these surveys were sponsored by the company Mallinckrodt Pharmaceuticals.
Here’s why I’m not surprised
In September, I wrote about how too many MS patients seem uncertain about what constitutes a relapse, and whether what’s happening is severe enough to warrant a call to their neurologist. Go to nearly any MS Facebook group and you’ll see patients asking other patients what they should do about a symptom and whether they should call their neurologist, or even go to the emergency room.
A few examples:
“Ok i am pretty new to all of this with only being diagnosed in april. (Written in May). When do you know you are having a relapse and when to go to the hospital?”
“Quick question: Can you have MS symptoms without having a relapse or a flare (if that is the right term)???”
“Just a quick question guys. I’m in a relapse, my legs and arms are weak and my balance is rubbish..should I exercise..even a little.. or rest up ?”
“Is a relapse for most of you a distinct event?”
Here’s why I think this is happening
What we have here is a failure to communicate. Forget about the word “relapse.” Either neurologists aren’t being clear with their patients about what events should trigger a call and when they can wait, or, the patients aren’t listening. Or both.
Some patients are also discouraged from calling because it may take over a day to get a response, and that response may come from a nurse or a receptionist who is unable, or unwilling, to help.
“When I called my neuro at xxxx he’s not available until June. I was basically told drink water, eat right & exercise.”
“My coworkers saw how I was struggling to walk. I had to have coworkers help me walk. The nurse said the neuro said there is no need to miss work just push thru!! WTF”
The Health Union survey, in particular, seems to confirm my suspicions.
Back in February, I wrote about how doctor-patient communication needs to be a two-way street.
“Information flow is not just the doctor’s responsibility. We, as patients, have a responsibility to ourselves to get the information we need. And that means being proactive about it and ready with questions before setting foot in the doctor’s office.”
But healthcare providers also have to do their part, and I think too many are shirking this responsibility. Are any of you out there who would like to weigh in?
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