6 posts tagged “thursday”

Throwback Thursday: Diabetes and stress

Posted August 27th, 2015 by

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, find others just like you in the growing communities on PatientsLikeMe. Almost 20,000 people with type 1 or type 2 are sharing their experiences to help others, for good.

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Throwback Thursday: Dr. Steve Feldman speaks about psoriasis and medication adherence

Posted August 6th, 2015 by

In honor of Psoriasis Awareness Month, we’re throwing it back to January 2013, when we sat down with Steve Feldman, MD, PhD, and Professor of Dermatology, Pathology & Public Health Sciences at Wake Forest University School of Medicine. In his interview, he spoke about the challenges for psoriasis patients, as well as the treatment advances that may be ahead. We’ve reposted his entire interview below so you can learn about his research studies on patients’ adherence to topical treatments.

As the founder of DrScore.com, tell us how rating doctors online can improve medical care.

Doctors want to give their patients great medical care. Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice. www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era.

What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy?

PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to permit data sharing among patients so they can learn from one another. Another extraordinary accomplishment has been to develop ways to combine that data in order to better understand diseases and the benefits and risks of the treatments for those diseases. Openness is a terrific attribute in this Internet age. I am very optimistic about medicine and health care providers and think there’s nothing to hide (and if there were something to hide, it ought to be exposed)!

You’ve done extensive research around treatment adherence. What are the considerations for patients?

Well, as the former Surgeon General put it, medicines don’t work if patients don’t take them. Taking medicine isn’t easy, unless it is a habit. And when a patient starts to use a new medicine, taking it isn’t a habit. Patients forget their medicine, they may be fearful of their medicine, there are just all sorts of reasons why patients don’t always take their medications. I think coming up with a plan, a system, for remembering is helpful. (I keep my own pills in a seven-day dispenser on the dinner table, which works great for me except when my family goes out to eat).

If patients are fearful, they should have an honest discussion with the doctor about it. One thing is certain: patients should be honest with their doctors about how they use their medicines. It does neither the patient nor the doctor any good for the patient to tell the doctor one thing but do something else. If a doctor does prescribe a medicine that the patient thinks is too costly or too risky, the patient should let their doctor know. The doctor wants to know and may be able to change things.

We have a growing psoriasis community. What challenges do psoriasis patients face?

Psoriasis has a huge impact on patients’ lives. It affects how patients perceive themselves, how other people perceive the person who has psoriasis, and, in many cases, how someone with psoriasis thinks they are perceived by others. The lesions aren’t just unsightly; they can be itchy and painful. The condition is caused by an overactive immune system, which can also result in arthritis and increased risk of cardiovascular disease and depression. There are good treatments, but the treatments have their downsides: they may be costly, inconvenient, messy, and risky. One of the biggest challenges is getting educated about all the potential options. It isn’t easy.

In our forum, patients have been discussing whether diet can affect psoriasis. What’s your take?

Well, I don’t know of any particular dietary issues that have been definitively shown to affect psoriasis one way or the other (except perhaps that starvation temporarily improves the disease, probably by inhibiting the immune system). But if a particular patient finds some particular dietary issue that makes their psoriasis worse (or better), they should eat accordingly. Some patients tell me beer and/or wine makes their disease worse or that avoiding gluten has helped. The PatientsLikeMe platform may be helpful in compiling the experiences of many people to see if these are issues for individuals or could truly help patients in general.

Any thoughts on what’s ahead in terms of psoriasis management and treatment advances?

As our understanding of the immune system improves, scientists at drug companies will be developing newer and perhaps better ways of controlling immune diseases, including psoriasis. As our health care system changes to become more cost conscious, there may be greater reliance on low cost treatments, like generic creams and ointments for people with mild disease and more use of phototherapy for people with more severe involvement. And with better data collection—like with PatientsLikeMe—we may develop a better understanding of what works, what doesn’t work, and what risks and benefits our treatments have.

If you’re living with psoriasis, don’t forget to connect with the more than 5,000 members of the psoriasis community at PatientsLikeMe.

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Throwback Thursday: Are you sleeping?

Posted July 9th, 2015 by

It’s time for another Throwback Thursday, and today, we’re rewinding back to the summer of 2013, when the staff at PatientsLikeMe shared about how they sleep. Sixty one employees helped kick off the “Are you sleeping?” campaign in a quick poll, answering questions about how long and how well they sleep each night. Check out the highlights below:

How well are you sleeping?
All in all, we found that the majority (89%) of our staffers were sleeping OK or better.

How well are you sleeping?

 

On average, how much sleep do you get every night?
Although our Zzzz’s were OK, 61% of respondents were only getting between 5-7 hours a night (and according the Center for Disease Control and Prevention, that’s way less than the recommended 7-8 hours for adults).

How many hours?

 

Do you have a problem…
For those who confessed to having sleep troubles, more people said it’s staying asleep that was the issue (77%).

sleep problems

 

What have you tried to help you fall asleep?
When it came to needing sleep aids to catch Zzzz’s, more of our employees turned to solutions like books (60%), lifestyle changes (50%), TV (31%), relaxation (31%) and sex (33%). Some tried over-the-counter interventions (22%), prescriptions (16%) and homeopathic techniques (14%). We also asked what was least helpful, and found ‘watching TV’ topped that list.

Tried to fall asleep

 

Since joining the PatientsLikeMe team, do you…
And last but not least, since joining the PatientsLikeMe team, only a handful had changes in their sleep, with 13 people saying they slept less (23%), and surprisingly, 5 (8%) actually slept more.

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If you’ve been struggling with sleep, read what PatientsLikeMe members Lori (living with idiopathic pulmonary fibrosis) and Marcia (living with multiple sclerosis) had to say about their insomnia. And don’t forget to reach out to the community in the Sleep Issues forum on PatientsLikeMe – over 40,000 members are sharing about everything related to their sleep.

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Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power

Posted April 30th, 2015 by

Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started sharing their data with leading researchers to debunk alternative “cures” for their disease and even started taking trials into their own hands. Read what else Paul had to say here.

And if you’re interested in learning more, click below to watch Paul talk about patients leading the direction of clinical research in an interview with BioMed Central:

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Throwing it back this Thursday for Crohn’s and Colitis awareness week

Posted December 4th, 2014 by

We’re throwing it back this Thursday, but to help raise awareness for something that’s happening right now: National Crohn’s and Colitis Awareness Week (Dec. 1st to 7th). For this #TBT, our very own Maria Lowe shares about her experiences with Crohn’s disease. Maria is part of the PatientsLikeMe Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

This week, it’s all about raising awareness for everyone living with IBD. You can learn how to help on the Crohn’s and Colitis Foundation of America’s (CCFA) website, and be sure to share your support on social media via the #CCFAawarenessweek hashtag. And if you’ve been recently diagnosed with either Crohn’s or UC, reach out to others like you on PatientsLikeMe.

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Throwback Thursday: Jamie talks about the future of medicine

Posted September 4th, 2014 by

It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients:  “Given my status, what is the best outcome I can achieve and how do I get there?”  Watch what else he had to say below:

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