4 posts tagged “DLQI”

What We’ve Uncovered About Psoriasis in the Summertime

Posted September 24th, 2012 by

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Uncovering Psoriasis 2012 Summer Survey

Are people with psoriasis more likely to cover up with pants and long sleeves in warm weather?  Or are they okay with “showing some skin” in shorts and tank tops?  This is just one of the things we set out to learn in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

Participants ranged in age from 10 to 80 years old (with an average age of 43), and 68% of them were female.  What did they have to say?  In response to some of our more playful questions, 62% of participants said they are okay with “showing some skin” in the summer, and 32% said that summer made them “happy as a clam.”  Conversely, 14% said it made them “cranky as a crab,” while 54% said it was a little of both.  What might be causing that crankiness?  49% of respondents reported that bug spray was the biggest skin irritant in the summer, with 30% citing sunlight itself and 22% pinpointing sunscreen.

How PatientsLikeMe Members Responded to the Question, "How Does Summer Make You Feel?"

We also asked some important research questions about how psoriasis affects quality of life, including social activities, sports, personal relationships and more.  These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis.  Don’t miss this in-depth look at how our psoriasis patients rate their “skinpact” as well what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).  You’ll also find tips and insights shared by our patients for coping with psoriasis during summer.

Click Here to Read/Print Our Free Report, "The Patient Voice:  Uncovering Psoriasis"

Like digging into the data and learning directly from patients?  Check out our previous Patient Voice reports on preparing for life after an organ transplant and getting the most out of inpatient psychiatric therapy.

Want to connect and learn from psoriasis patients like you?

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New Quality of Life Index and More for Psoriasis

Posted February 6th, 2012 by

Are you one of the roughly 700 patients with psoriasis at PatientsLikeMe?  We’ve got some exciting new features just for you.

A Sample Graph Produced by Taking the Dermatology Life Quality Index (DLQI)

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.

Instructions on How to Measure Body Surface Area (BSA)

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.

The Profile Icon or "Nugget" for Psoriasis Patients

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.