5 posts tagged “adherence”

Hawaii 5-0: PatientsLikeMe at AAN 2011

Posted April 21st, 2011 by

Here at PatientsLikeMe, we are not only focused on helping patients improve their health outcomes, but also on the cutting-edge research that enables those improvements. That’s why we couldn’t imagine better news when we learned that all five of our academic submissions to the American Academy of Neurology (AAN) were accepted for exhibition at their Annual Meeting.

AAN Annual Meeting 2011

But then we received even more good news: AAN 2011 would be in Honolulu, Hawaii! So we packed our bags two weeks ago and headed to paradise.

As home to over 45,000 patients living with neurological conditions – including epilepsy, multiple sclerosis (MS) and Parkinson’s disease (PD) – PatientsLikeMe is a logical partner for the AAN. Here are some highlights from three of the five studies we presented at the Annual Meeting (click on the title to see the poster for each):

  • Patient-Reported Clinician Adherence to Epilepsy Performance Measures of Quality Care. Last year the AAN developed guidelines for doctors treating patients with epilepsy. Naturally, we wanted to know: do patients like you observe their doctors following these guidelines during office visits? According to our survey, most doctors do, but epileptologists and neurologists perform better than non-specialists. Fewer of you felt that your doctors discussed treatment safety and side effects enough with them.
  • PatientsLikeMe, an Online Community: Benefits for Patients with Epilepsy. Here’s something we bet you already knew: there’s value in finding other patients like you! In our survey of epilepsy patients, we learned that 55% of you consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.

Yes, the weather was lovely in Hawaii, but that’s not the only reason we wish you could have been there. Our biggest takeaway was that so many researchers, doctors and industry partners want to hear from patients like you! They are excited about the work we have accomplished together already, and they are full of ideas about more that can be done. We flew home feeling exactly the same way.

That’s why we hope you’ll keep sharing, keep taking surveys and keep telling us what you really think. Because your message is getting across!

PatientsLikeMe member pwicks PatientsLikeMe member agraham

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.

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