At the end of 2011, we unveiled the Dermatology Life Quality Index (DLQI), a new 12-question survey that helps you measure how psoriasis affects your day-to-day life. Answer the questions regularly to produce a graph (see above) showing how things are changing over time. That way, you’ll be able to see how various treatments and interventions are impacting your quality of life.
Another new feature is the Body Surface Area (BSA) lab test, which measures the percentage of your skin affected by psoriasis. Not sure how to approximate that? Your palm (including fingers) represents about 1% of your body surface area, so use that as a proxy. How many palms would equal the area of your body affected by psoriasis? If it’s 15 palms, for example, that would be equal to 15% of your body surface area.
Finally, if you have listed psoriasis as your primary condition (and more than 350 of you have), you may have noticed that you have a brand new patient icon or “nugget.” It displays your latest DLQI and BSA scores as well as your age, gender and latest InstantMe status (e.g. “Very good” in the example shown to the left).
So, what do you think of these new features? Have you tried them out? We’d love to hear your thoughts and feedback.
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.
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 thatthe 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.
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.
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.
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.