7 posts tagged “Wicks”

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


Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)

Posted January 5th, 2011 by

The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community.  In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times.  All of this is because of what you share with us.

Yesterday, we highlighted some of the research work we’ve done in 2010 across our four newest communities.  Today, we’ll highlight our older communities.  Below is also a highlights reel of some of this work.

HIV

  • Throughout 2010, we discussed the goal and benefits to measuring your quality of life (QoL). This concept of measuring QoL started in our HIV Community at the end of 2009. Earlier this year in a blog and podcast, Researcher Michael Massagli Ph.D. discussed some of the insights that are being shared by HIV patients through the QoL survey. For instance, we found that the average physical, mental and social well-being score of patients with a CD4 count below 200 is significantly lower than for those of you with a count above 200.

Parkinson’s Disease

  • The Parkinson’s Community has always excelled in reporting their health status through the Parkinson’s Disease Rating Scale (or PDRS). When answering the questions on this scale, members often asked us: “Should I respond when my drugs are working and I’m at my best (‘On’) or when my drugs aren’t working and I’m at my worst (‘Off’)?” Back in October, we released a brand new feature in the PD community that allows you to rate your symptoms as either “On,” “Off”, or in both conditions so now you can see the effect of your medications for yourself.

Multiple Sclerosis

  • We hear a lot from you about the difficulty of adhering to medication. Early last year, our research team developed a new rating scale for patients with MS to assess the difficulties of sticking to their medication. We presented findings at the Consortium of Multiple Sclerosis Centers (CMSC), the main North American conference for MS specialist physicians, nurses, and researchers. The team is currently working on publishing these findings.

ALS

  • Co-founder Jamie Heywood discussed our research into lithium in ALS at the TEDMED conference late in 2009. In early 2010, TEDMED released the video of his presentation where he shares our vision of the future of medicine. The team is currently working on publishing the lithium findings.
  • PatientsLikeMe, in collaboration with researchers at Oxford University, discovered that when ALS patients get symptoms in their arms first, they’re most likely to get it in their dominant hand. This research was presented at the ALS MND Symposium and cited on this MND Research blog.
  • We also collaborated with the Northeast ALS Consortium (NEALS) to examine the decision-making process that patients with ALS go through when considering whether or not to take part in research studies; this was published in the peer-reviewed journal Amyotrophic Lateral Sclerosis.

Here’s a short video highlighting much of the research you’ve helped us do in 2010.

Finally, I want to recognize how our team has expanded this year to better focus on what matters to you most.  Some new additions include:

  • Brant Chee, Ph.D. – a specialist in natural language processing and detecting drug safety data in patient reported text
  • Kate Slawsky, MPH – an outcomes researcher helping to develop custom surveys for our partners and our platform
  • Shivani Bhargava – a research assistant supporting the team in ensuring our platform holds high-quality data about our patients

Thank you all for having a voice in research. There’s so much being learned from what you are sharing every day, and we are excited about what 2011 will bring.

PatientsLikeMe member pwicks