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Friday, October 5, 2018

Health Literacy Month: How to Talk with Your Doctor about MS Research By Nancy Ryerson

Health Literacy Month: How to Talk with Your Doctor about MS Research

By Nancy Ryerson

Have you ever felt confused by your doctor’s instructions? If so, you’re not alone. Today, 90 million Americans struggle with what healthcare professionals call low health literacy. Many patients struggle to follow directions on a medicine bottle or understand their doctor.

In honor of Health Literacy Month, we’re sharing a few ways you can have a better conversation with your doctor about MS research in particular.

Unfortunately, patients with low health literacy also tend to have worse health in general. They’re more likely to be admitted to the hospital, and have higher healthcare costs, too.

The problem also impacts clinical trial participation, which can be important for MS patients. Studies show that patients who aren’t sure what “clinical trial” and “clinical research” mean are also less likely to participate in trials.

Clinical trials research potential new treatments for conditions like MS. New medications can’t reach patients without clinical trial volunteers. If you’re interested in participating, researchers list MS trials on ClinicalTrials.gov. Because it was built for researchers, the website can be difficult for patients to use. To make the process easier, MS Views and News has a clinical trial search tool that makes it easier for people with MS to find clinical trials matches.

If you do find a clinical trial you’re interested in, share it with your doctor. Ask any questions you have about the trial. If you’re looking for ideas, here are few questions to consider:

     Do I qualify for this trial? Why or why not?
     How would this trial fit with my existing treatment?
     Do you recommend I apply for this trial? Why or why not?

Some patients with MS may feel concerned about joining a clinical trial because they don’t want to receive a placebo, or “sugar pill.” Not all clinical trials use placebos. Many measure the effectiveness of a potential new treatment against a treatment that’s already available. In 2001, the National MS Society published recommendations related to the use of placebos in MS clinical trials. The report outlines when it’s ethically okay to use a placebo in a MS trial, and when trials should find alternatives.

As you review a clinical trial with your doctor, ask for help understanding whether the trial will use a placebo, if it’s not clear from the trial listing. If you decide to go to the study site to learn more about the trial, you can also ask many more questions about the trial there. These questions can include:

     How long will the study last?
     What is the goal of the study?
     Will I be reimbursed for my expenses?
     What can I expect at each study visit?
     What did previous studies find out about the treatment? Have the results been published?
     What are the potential risks and benefits of taking the study drug?
MS is a difficult diagnosis to navigate, and chances are, you have questions every time you talk with your doctor. Even if you feel confused or unsure during your appointment, remember that many other patients feel that way, too. Ask your doctor for help, and empower yourself to seek better care.



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