Health Literacy Month: How to Talk with Your Doctor about MS
Research
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.
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.
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.
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 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.
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:
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.
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:
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?
Have the results been published?
● What are the potential risks and benefits of taking the
study drug?
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.
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.
::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::
Visit our MS Learning Channel on YouTube: http://www.youtube.com/msviewsandnews
