2 posts tagged “PatientsLikeMe poll”

Results from PatientsLikeMe Diabetes Poll

Posted November 22nd, 2011 by

FOR IMMEDIATE RELEASE

PATIENTSLIKEME POLL REVEALS UPCOMING HOLIDAY SEASON MOST DIFFICULT FOR DIABETES PATIENTS CONTROLLING BLOOD GLUCOSE

PatientsLikeMe Introduces Daily Glucose Monitoring Feature in December

CAMBRIDGE, MA – November 22, 2011 – According to a recent PatientsLikeMe® Poll, one out of every two type 2 diabetes patients (50%) and nearly two out of every three type 1 diabetes patients (65%) say having diabetes affects their holidays.  More than half of respondents (59%) say the upcoming holiday season, marked by Thanksgiving and Christmas, is most difficult for controlling blood glucose; 25% don’t find the holidays difficult.  When asked what strategies they use if their blood glucose rises after increased consumption during the holiday, diabetes patients had mixed responses with three in four type 1 patients (76%) changing their medication dosage, while type 2 patients try alternative things like more exercise (34%) or just avoiding glucose-raising items altogether (34%).  Two hundred and twenty-six (226) diabetes patients sharing their health data on PatientsLikeMe.com responded to the poll.

A Word Cloud of Terms That Appeared Six or More Times in Our Poll Respondents' Freeform Comments

“This week represents the beginning of a challenging season for diabetes patients faced with group meals and gatherings that could impact their health,” says Ben Heywood, President and Co-founder of PatientsLikeMe.  “We all have family or friends with diabetes and these poll results give a glimpse into some of the challenges they face and the strategies they use to overcome them.”

Are diabetes patients sensitive about discussing their disease with family and friends at the table during the holidays? An overwhelming 90% say no.  However, more than one in three patients (38%) still feel friends and family don’t understand how diabetes affects them during the holidays.  With holiday meals and parties so prevalent over the next six weeks, many of the respondents (84%) say they manage with what’s available, while 16% make some adjustment to accommodate for their diabetes (7% host to be in control, 7% eat before going out and 2% bring their own meal).

Highlights of the Recent PatientsLikeMe Poll (Click for Full Results)

PatientsLikeMe will introduce a daily blood glucose monitoring feature for its 2,000+ diabetes patients in early December. Patients will be able to report daily glucose levels, as well as continue sharing and learning from HbA1c scores (used to monitor the glucose control of diabetics over time), treatments and dosages (such as Metformin or insulin) and symptoms and severity (including blurry vision, excessive thirst and fatigue).  In recognition of Diabetes Awareness Month, PatientsLikeMe recently collaborated with industry and nonprofit partners to launch the CallingAllTypes (www.callingalltypes.com) campaign in an effort to help raise awareness and funds for the disease.

NOTE TO EDITOR: The complete PatientsLikeMe® Poll results can be downloaded here. All poll results must be sourced as originating from PatientsLikeMe®.

PatientsLikeMe® Poll Methodology
Between November 14th and November 18th, PatientsLikeMe invited all diabetes members to participate in the PatientsLikeMe® Poll, with 226 members completing the poll. Respondents represent patients with both type 1 diabetes (24%), where patients are usually diagnosed at a young age and need to daily blood glucose monitoring and insulin therapy, and type 2 diabetes (73%), where patients develop the condition gradually over time typically due to environmental factors resulting in increased blood glucose levels. In this poll, more than 200 respondents shared their HbA1c scores, with 49% reporting a score of 7.0 or lower (which represents well-controlled glucose).

About PatientsLikeMe®
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and https://blog.patientslikeme.com]


Mental Illness Awareness Week: Stigmas, Stereotypes and Sharing

Posted October 6th, 2011 by

On Tuesday, we recognized Mental Illness Awareness Week (October 2-8) by sharing some of our mental health members’ vivid descriptions of what depression feels like. Today, we’ve taken a look at what else our members are sharing – or not sharing – about more than a dozen mental health conditions at PatientsLikeMe.

Share How You're Feeling Right Now with Instant Me

On the site, more than 80% of our active mental health members (meaning, those who have logged in during the last 60 days, n=1,589) are capturing the various factors affecting their mood and sharing those experiences with patients like them. 1,339 have posted an InstantMe update (shown above) to record their moment-to-moment status, and 843 have completed a weekly Mood Map survey.

But what about sharing in the real world – outside of PatientsLikeMe? In a poll we conducted earlier this year, we discovered that patients with a mental health condition are, along with HIV patients, the least likely to share their diagnosis with others. For instance, overall results suggest that when it comes to immediate family, 81% of respondents say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in mental health conditions, it’s 56%.

February 2011 PatientsLikeMe Poll Results from 3,858 Patients with 10 Different Conditions

Interestingly, however, our poll also found that PatientsLikeMe members have shared their diagnosis with more people as a result of using the website. For mental health conditions (formerly called mood conditions at PatientsLikeMe), 28% of respondents said they had told more people about their condition as a result of PatientsLikeMe, as the graphic above illustrates. Here’s how one mental health member explains it:

“Although I have not created a large number of [forum] posts on PatientsLikeMe, just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PatientsLikeMe allowed me to explore others’ perceptions of their experiences. Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PatientsLikeMe, made me feel more comfortable discussing my diagnosis away from PatientsLikeMe.”

This, of course, speaks to the stigma surrounding mental illness, which is something Mental Illness Awareness Week aims to change. (The 2011 theme is “Changing Attitudes, Changing Lives.”) At PatientsLikeMe, we think change comes from getting to know real patients living with real mental health conditions. As one person commented on our Facebook page, “I always see people making fun of ‘crazy’ people, frivolous jokes including depression and bipolar, and movies that skew the severity, understanding and seriousness of these disorders.”

Can sharing your mental health experiences help erase the stigmas and stereotypes? The Academy Award-winning actress Glenn Close, whose sister has bipolar disorder, certainly believes so, as she writes in a great article entitled “The Stigma of Silence.” She argues that talking openly about mental illness with “more candor, more unashamed conversation” can “deconstruct and eliminate stigma.” We believe so too, but we’d love to hear your thoughts in the comments section.