Scale

Throwback Thursday: Diabetes and stress

Just about two years ago, nearly 600 members of the PatientsLikeMe community completed a survey called the Diabetes Distress Scale (DDS), a 17-item questionnaire which measures the amount and types of problems diabetes can cause in a person’s life. And today, we’re throwing it back to the summary of the results. Here’s what Dr. William Polonsky, the Founder and President of the Behavioral Diabetes Institute, and the co-creator of the DDS, had to say at the time about diabetes and stress: “I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.” You might recognize Dr. Polonsky from his subsequent blog podcast and additional research with the WHYSTOP scale. You can view the results of the DDS as a PDF, but check out some of the graphs below.   Have you had an A1C test done in the past year? If you’re living with type 1 diabetes or type 2 diabetes, …

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ORE Researcher Series: McMaster University

Last month, you met ORE researcher Tamara Kear, PhD., R.N., CNS, CNN, and you listened to her talk about her research on hypertension, one of the factors that can lead to a person developing kidney disease. Today, we’re introducing McMaster University Professor Gordon Guyatt and students Melody Ren and Reza Mirzaie. The question they are asking is “how are patients currently receiving bad news from a medical professional, and are the guidelines doctors have on delivering bad news actually correct?” Below, listen to the three researchers talk about their work and how the ORE platform and PatientsLikeMe made their research possible. What exactly is the ORE? 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. Share this post on Twitter and help spread the word.

Spoons and forks – not just for summer picnics

There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we have available. Here’s how it works: Pretend that you have a handful of spoons that represent all the energy you have for the day. Depending on your health, you’ll need to use some of those spoons to get dressed, make a pot of coffee or take care of your pet. Once you’ve done the daily ‘essential’ activities, you’ll know how much energy you’ve got left for other things, like going for walk on a summer evening. The great thing about the Spoon Theory is that it works for everyone – you choose how many spoons to start with each day and know how many you have left. It’s also an easy way to communicate with others how you’re feeling at any given time. Maybe you’re not feeling like that hike with trekking poles in the woods. It may be hard to say ‘no,’ but easier …

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ORE Researcher Series: Tamara Kear is listening to kidney patients

Over the next few months, you’ll meet a few Open Research Exchange (ORE) researchers, and first up is Tamara Kear, PhD., R.N., CNS, CNN. She has over 20 years’ practice as a nurse caring for patients with kidney disease. Her research is focused on hypertension, one of the factors that can lead to a person developing kidney disease. Tamara has developed a scale for healthcare providers that helps them learn how well a patient is doing at home and identify barriers they are experiencing in managing their hypertension. Her goal is to develop a better tool. In her video, she explains her ORE research and her philosophy that patients should be “not just informers for researchers, but actually the researchers themselves.” What exactly is the ORE? 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. Share this post on Twitter and help spread the word.

PatientsLikeMe and the Schwartz Center join forces to better understand patients’ perceptions of compassionate care

                             Collaborators Commit to Sharing Information and Educating Patients CAMBRIDGE, Mass.—December 9, 2014—PatientsLikeMe and the Schwartz Center for Compassionate Healthcare today announced that they will work together to better understand patients’ perceptions of compassionate care. The collaboration’s goal is to strengthen the relationship between patients and their healthcare providers, which has been associated with better health outcomes, lower costs and increased satisfaction. Among their work together, the two organizations will survey PatientsLikeMe members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, which the Center hopes healthcare organizations will use to measure and reward the compassionate care doctors, nurses and other caregivers provide to patients and families. They will also jointly develop and distribute content to educate patients about compassionate care and what patients can do to elicit compassion from their caregivers. “Our research shows that while patients believe compassionate care is critically important to successful medical treatment and can even make a life-or-death difference, only about half of patients believe the U.S. healthcare system is a compassionate one,” said Julie Rosen, executive director of the Schwartz Center. “As in other areas of healthcare, we …

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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog. 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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