9 posts tagged “JMIR”

How Patients Like You Use Your Treatments in the Real World (Cont’d)

Posted February 1st, 2011 by

Here is our second blog about the two recent studies published in the Journal of Medical Internet Research (JMIR) about how patients like you are actually using your treatments.

Study Two:  Treatment Adherence Barriers

Your doctor has likely told you that it’s best to take your medication as prescribed.  But in the real world, there are barriers that can prevent you from doing so.  How do you reduce those barriers so that your medication has optimal results?  That was the focus of our second JMIR study entitled “Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ).”

This investigation was carried out with our partner Novartis, and it addresses a problem that many of you in our MS Community have struggled with over the years:  the barriers to being adherent to your injected or infused disease-modifying therapies (DMT). By combining a review of the scientific literature with a systematic search through MS forum conversations, we first worked to identify the full spectrum of issues that stop patients like you from taking your treatments on time as prescribed by your neurologist.

Then, we used this information to construct a rating scale called the MS Treatment Adherence Questionnaire (MSTAQ), which MS patients like you can use to quantify how many doses you’ve missed in the previous 28 days and identify and measure the barriers that kept you from being fully adherent.  You can download a copy of the MSTAQ here.

study2
Significant differences in missed dose ratio for patients who reported missing a

dose in the past 28 days; 0.00 = fully adherent, 1.00 = missed every prescribed dose

The scientific literature was already well aware of issues such as forgetting to take a single dose or taking a “drug holiday” to avoid side effects, but the comments of patients like you in our MS forum highlighted some other significant influences. For instance, you have been sharing tips and tricks with one another for minimizing injection site reactions (e.g. using ice cubes), so we added a new section to the scale that asks you how many coping strategies you’ve used.

In doing so, we discovered that your score on the MSTAQ was positively correlated with how many doses of your treatment you missed that month.  But intriguingly, the number of coping strategies you used was negatively correlated.  In other words, the more coping strategies you use, the better you are at being adherent to your treatment.  By publishing these findings in an open-access journal and sharing this rating scale with the research community, we hope to help patients like you understand what’s driving your adherence in partnership with your physician.

As always, we are grateful to you, our fantastic patients, as your sharing makes these discoveries possible.  Your data (and even your words in the forum) are truly advancing the field of medicine and empowering other patients like you to live their best lives.

PatientsLikeMe member pwicks


How Patients Like You Use Your Treatments in the Real World: Two New Studies

Posted January 31st, 2011 by

Ever wonder how many patients like you are using drugs off-label?  Or how hard is it to take MS medications as prescribed?  You’re about to find out.

In January, the PatientsLikeMe R&D team published not one but two studies in the Journal of Medical Internet Research (JMIR) in an effort to provide answers about how patients like you are actually using your treatments.  We’ll highlight both studies here on the blog today and tomorrow.  (Note: Because JMIR is an open-access journal, the articles are free for you or anyone to read in full, without fees or subscriptions or a library card.)

Study One:  Off-Label Drug Usage

Our first study looked at the rates of off-label drug usage in our communities.  What do I mean by “off-label”?  When a drug is approved by the FDA (or outside of the US, by other regulators such as the EMEA), it is “indicated” for the treatment of a specific condition, which permits the manufacturer to market it to doctors who treat that condition and patients diagnosed with it.  This indication is described on the medication’s label.

Any physician may choose to prescribe a treatment for a purpose that has not been indicated, however.  This is known as “off-label” use.  Manufacturers are not allowed to promote such use, though, and because most research focuses on new drug development, there are few systematic ways to discover how common off-label drug use is or to quantify its effects.  Yet at PatientsLikeMe, thousands of patients like you are sharing data on this very practice.  So, the R&D team decided to take a closer look.

This led to our JMIR study entitled “Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe” (which I am proud to report was the winner of the inaugural Medicine 2.0 award).  We started by identifying two widely used drugs to study:  amitriptyline (a tricyclic antidepressant indicated for the treatment of depression) and modafinil (a wakefulness-promoting drug indicated for the treatment of narcolepsy).  Then, we examined how patients like you were using them used across five condition-based PatientsLikeMe communities: MS, fibromyalgia/chronic fatigue syndrome, ALS, mood disorders (depression, bipolar disorder, and anxiety disorders) and Parkinson’s disease.rd1

Our data revealed that less than 1% of almost 2,000 patients taking modafinil and only 9% of nearly 1,400 taking amitriptyline are taking each drug for its approved indication.  That means the vast majority of you are taking these drugs “off-label.” You also reported higher perceived efficacy for off-label uses than for approved indications, surprisingly. Another interesting discovery is that many of you cited what are normally considered the side effects of amitriptyline (e.g. dry mouth) as your purpose for taking the drug (e.g. to treat excessive saliva).

If researchers are only looking at clinical trial data, they’re missing the whole story because they don’t know what’s being prescribed off-label. To be clear, off-label prescribing is commonplace and standard practice in many conditions, with safety and efficacy established by clinicians’ experience rather than formal studies. However, whenever we can improve upon the status quo by unlocking a new data source (such as what you share via our site), we should seek to maximize that information.

Up next tomorrow…how you’ve helped develop patient-reported outcome instruments.

PatientsLikeMe member pwicks