In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about preventing life-altering conditions that result from high blood pressure, such as stroke, heart attacks, heart failure and chronic kidney disease.
Over 500 PatientsLikeMe members who are living with hypertension worked with our research partner Tamara Kear, Ph.D. R.N., CNS, CNN from Villanova University on our Open Research Exchange (ORE) platform to help make the instrument the best it can be.
From one person we heard — “I have been diagnosed with white coat syndrome. I wore a monitor for 24 hours and it was regular.” What’s that? Read on in the results.
What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.
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- Filed Under: Patient Experiences
- Tags: as, CNN, CNS, exchange, hypertension, open, Open Research Exchange, ORE, partners, patients, Patients as Partners, PatientsLikeMe, Ph.D. R.N., Research, results, survey, Tamara Kear
This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who shared their experiences and helped uncover a little more.
Here’s a sneak peek:
What do we know about those who took part this summer? The average age of those who answered this survey was 48, and 70 percent of respondents were women. These people also told us about what activities they prefer. A majority of members enjoy swimming in the summer, and out of the swimmers, more preferred the pool (39%) than the ocean (35%). And when it came to clothing choices, we learned that the majority of you (70%) are actually fine with ‘uncovering’ a little skin, choosing to wear T-shirts and shorts versus long sleeves and pants.
You can check out the full results by downloading this report — Patient Voice: Uncovering Psoriasis (Summer 2013). You’ll find in-depth look at how our members with psoriasis rated their “skinpact1” this summer along with 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).
Interested in other seasonal psoriasis insights? Here’s a recap of the other seasonal reports, made possible by the experiences that PatientsLikeMe members have shared over the past year:
Want to connect and learn from psoriasis patients like you?
1 The Dermatology Life Quality Index (DLQI) is used to measure the “skinpact” that psoriasis can have on patients. It asks questions like “How self-conscious are you because of your skin”, “How much has psoriasis interfered with your personal activities”, or “Does your skin condition affect your ability to do sports?” The questionnaire runs from a low score of 0 (no impact) to a maximum of 30 (extremely large impact).
- Filed Under: Conditions, Patient Experiences, Psoriasis
- Tags: patient, PatientsLikeMe, psoriasis, Research, results, summer, survey, uncovering, voice