2 posts tagged “atec”

A Peek at the September Newsletter for Members

Posted September 30th, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our August edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

What type of exercise – and how much – is right for your condition?

We all know exercise is a good thing, but if you’re managing a disease, it can be a little trickier to find the right regimen. How much exercise? What type? How often? The answers, of course, are different for everyone, and it can take time and patience if you don’t know where to look. Why not start with patients like you?

A Patient's Walking Treatment Evaluation History

Patients with many different conditions have shared what’s worked and what hasn’t for more than 150 types of exercise. Some of the most common ones include walking, yoga, stretching, aquatic therapy and swimming. How do other members rate these exercises? You can find out in the treatment evaluations. As one member writes, “I have felt less need for pain meds, and I have slept better on the nights I walk.”

Whether you’ve found your ideal routine or are still searching, you may want to become part of an “online buddy system.” For example, subscribe to one of the forum threads on exercise listed below in the “Join the Conversation” section. Can’t find one for your room? Start your own. Let’s get moving together!

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

Check out what other patients are saying about exercise in the forum. Then jump in with your own questions and answers. (New members are welcome anytime!)

Need help with something on the site?  Visit the Technical Help Using PatientsLikeMe Room.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site, Here are our top functionality enhancements for September.

EMAIL AND NOTIFICATION UPGRADES
There are so many ways to stay connected at PatientsLikeMe – which can be a blessing and a curse sometimes. Recently, we made some major changes to our email and notification system. In addition to fixing reported bugs, we’ve made it easier for you to turn email notifications on/off with the click of a mouse. We’ve also improved the unsubscribe process. Visit your Email Settings page to update your preferences.

Your New Email Settings Page

HIDDEN FORUM TOPICS
Wish you could avoid certain forum threads? Consider it done with our new “Hide Topic” button (pictured below). They’re not gone forever if you change your mind, however. Simply go to the “My Hidden Topics” page to find them.

Hide Topics by Clicking This Button

AUTOMATIC LOGIN VIA VERIFIED EMAIL
If you’re tired of having to log in when you click a link in a PatientsLikeMe email – such as this monthly newsletter – you’re going to love hearing that you can now log in automatically via verified email. To turn on this time-saving feature, go to your Account Settings page and select “Yes” as shown below.

Click Yes and You'll Never Have to Log In to Click Links in a PatientsLikeMe Email Again

NEW OUTCOME SCORE FOR AUTISM
Finally, we’ve introduced a new outcome score for patients with an autism spectrum disorder (ASD) called the Autism Treatment Evaluation Checklist (ATEC). You’ll see that the ATEC score is now displayed in the “puzzle piece” icon in all ASD patient nuggets, as illustrated below.

Autism Patient Nugget with ATEC Score


Scoring with ATEC on PatientsLikeMe: New Feature for Patients with Autism

Posted August 30th, 2011 by

When we expanded PatientsLikeMe from serving a couple dozen conditions to serving several hundred overnight, we realized very quickly that our work was only just beginning. Since that early morning in April, our members (and staff) have added a lot more data to the system, including core symptom groups and commonly prescribed treatment surveys for hundreds of conditions. Last week, we added a new outcome score for Autism Spectrum Disorder (ASD), a rapidly growing population in our community.

ATEC Screenshot

Now, all patients with an Autism Spectrum Disorder (including Asperger’s Syndrome or PDD-NOS) have the ATEC outcome score available on their profile. The ATEC (or Autism Treatment Evaluation Checklist) is a survey developed by the Autism Research Institute to help parents of children with autism record communication, sociability, sensory awareness and behavior.

The saying goes, “if you’ve met one child with autism, you’ve met one child with autism.” Given the heterogeneous nature of the condition, it’s extremely difficult to find two similar patients with autism. That said, on PatientsLikeMe, patients and caregivers can find and connect with others based on a number of criteria, including age and location, individual symptom scores, treatments taken and now an ATEC score that relates to overall level of function.

Below is a screencast featuring the ATEC and the new patient “nugget” for members with an Autism Spectrum Disorder (as well as changes we made to our QuickStart Guide for caregivers).

By receiving scores for each individual component of the ATEC, you can choose which areas you should explicitly target in therapy. We encourage all of our members managing an Autism Spectrum Disorder to take the ATEC to find out more about your condition and how you can improve your outcomes.