Need Swell Sister Feedback on New LE Mobile App!

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LindaLou53
LindaLou53 Member Posts: 929
edited June 2014 in Lymphedema

Hello All,

If you or someone in your family has access to one of the following Apple smart devices, you could help provide important feedback on a new FREE Lymphedema mobile app designed to help patients locate trained lymphedema therapists.  Here is a list of devices compatible with the new app:

iPhones - 3GS, 4, 4S, 5

iPod Touch - 3rd, 4th and 5th generations

iPad - any version

You must be running iOS 5.0 or later on your device in order to run the app.

The new app is called LOOK4LE and is being developed by the American Lymphedema Framework Project (ALFP) and the University of Missouri Informatics Institute. The app currently has over 900 LANA certified Lymphedema therapists listed and more will be added as therapists opt to add their contact info. The app became publicly available on Sept 10 and is a free download from the iTunes App store.

A formal description of the app with print screens and a link to the App Store can be found on the developers website at:

http://hydrogensoftware.com/products.php?id=9

The developers wish to reach out to the Lymphedema community for feedback. They would like input regarding any of the following areas:

  1. User friendliness
  2. Content Completeness
  3. Functionality
  4. Technical Issues 
  5. Additional features desired for new versions

I was asked to do a beta review of the app and got permission to also invite our lymphedema community here at BC.org to lend their feedback. There is a brief online survey consisting of 10 questions with the ability to leave comments as you desire.  The survey link is not currently publicly available, but I will provide it to anyone with a compatible device who is willing to complete the survey after testing out the app. Just PM me if you wish to participate in the survey.  For anyone who prefers to use the app but not go through the formal survey process, I would still be interested in hearing your comments and first impressions.  Feel free to PM me with any issues or suggestions and I will see that they get forwarded to the development team.

I am always excited to see LE getting attention in any form and being added to the world of digital mobile apps is a good thing.  Let's give the developers honest critique and suggestions for what we would like to see in a "find a LE therapist" mobile application!

Thanks for your consideration. 

Linda 

 

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Comments

  • carol57
    carol57 Member Posts: 3,567
    edited October 2012

    Linda, I'm using an Android phone, so no help to you, but THANK YOU for inviting everyone to help!  I hope you get lots of reports here.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    I have received 2 responses so far from LE patients who use Apple smart devices. Could use input from more persons so I am bumping this up. Please feel free to download and try out the app even if you don't wish to complete the survey. Thanks!

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  • GottaloveNED
    GottaloveNED Member Posts: 211
    edited October 2012

    I downloaded it and will play a little bit more before taking the survey. Feel free to pm me the info & link. I'm using it on an iPad. I searched my area, but I live in northern wi and no one was even within 100 miles. :-(. I had to pretend I lived in southern wi.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    Thanks GottaloveNED!

    I PM'd you last night with the survey info and link.  Even though there are over 900 therapists currently listed in the app, there are still many areas that do not have trained therapists available locally. Hopefully, more therapists will be added to the work force as training courses continue to be held by the main LE certification schools.  I will be at a PT school next Friday to assist in their clinical labs which are part of their 2 day LE curriculum.  We already have one student who has expressed interest in specializing in LE therapy when she graduates.  She has asked to attend our monthly LE support group.  We always encourage LE therapists to attend the support groups. They can learn so much from the patients!  One of our support group members, who drives 100+ miles roundtrip from another state to attend our meetings, has just found a sponsor in his state willing to start their own LE support group.  I presented at their first meeting last month.  Its a slow process but little by little LE awareness is improving.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2012
    LindaLou, we haven't heard any news about your support group lately, so it's really encouraging to hear how well it's going. You rock!Cool
    Binney
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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    Thanks Binney!  We have been meeting every month for almost 6 years now. Meeting attendance varies from 4-5 to 12-15 pending the weather and time of year. Our membership breaks down to approx 50% upper quadrant and 50% lower quadrant patients. Some with primary LE, most with secondary. The Mercy Hospital network became our sponsor 2 years ago and provides their own LE therapists to rotate as presenters of specific topics. One of our therapists specializes in Head and Neck LE. The doctors in a local oncology practice are now beginning to routinely refer their post-op patients to the therapists for LE evaluations and education.  There is no question there is an ongoing need for LE information and patient support.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2012

    My issues with the app:

    1) It only lists LANA certified therapists, not all qualified therapists, and LANA certification has been falling over the last decade due to the fact that the test costs money and offers no tangible benefits. A tiny fraction of qualified therapists take the test. So the three LANA LE therapists in my area showed up. I know one is horrible. The other two are great (one is my therapist), but I also know of a number of fully trained LE therapists who are far superior to the the LANA certified woman who popped up. (The head of the LE clinic at the largest hospital in the state brought Klose to our area, where I took the class with her. I discussed this LANA therapist with the head--who is now LANA eligible, but not yet certified, yet a great therapist, and she concurred with my assessment.)

    2) The ACS information: ARGHHH

    They have the page that says it's okay and expected to swell for 6-12 weeks after surgery and radiation and although the quiz does say to contact your doctor, the page on the app just says to elevate and squeeze your fist--for up to 3 months of arm swelling! 

    Binney and I had contacted the ACS about concerns and they did modify the pages, but somehow this one skipped our observation, and I would bet it is why the stupid "After the Shock" said LE swelling normally goes away in 6-12 weeks.

    http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/Lymphedema/WhatEveryWomanwithBreastCancerShouldKnow/lymphedema-with-breast-cancer-how-to-reduce-swelling-after-surg-or-rad

    Right after surgery, the affected arm or breast area may swell. This swelling is usually short-term and slowly goes away over the next 6 to 12 weeks. Talk to your doctor or nurse about what you should expect and what you should do. These tips may help ease the swelling:

    Use your affected arm as you normally would when combing your hair, bathing, dressing, and eating.
    Put your affected arm above the level of your heart 2 or 3 times a day and keep it there for 45 minutes. Lie down to do this, and fully support your arm. Place your arm up on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder.
    Exercise your affected arm while it is supported above the level of your heart by opening and closing your hand 15 to 25 times. Repeat this 3 to 4 times a day. This helps reduce swelling by pumping lymph fluid out of your arm through the undamaged lymph vessels.


    To get back your normal shoulder and arm movement, start exercising your affected arm about a week after surgery. Be sure to talk to your doctor, nurse, or physical therapist before doing any exercises. For most people, the full range of motion is regained within 4 to 6 weeks.


    Keep in mind that the arm may swell if you have radiation therapy after surgery, and the swelling may last longer than normal. Radiation may also cause some swelling in the chest and breast toward the end of the treatment. In most cases, this swelling is short-term and will slowly go away. During treatment and up to 18 months afterward, you should do simple stretching exercises each day to keep full movement in your chest, arm, and shoulder.

    Women who have had many lymph nodes removed and women who have had radiation therapy may have a higher risk of developing lymphedema.


    Last Medical Review: 03/01/2012

    I really hope Jane gets the ACS to change this page: I worked with them in March, but this escaped me.

    We don't want this out there under the ALFP.

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  • NancyD
    NancyD Member Posts: 3,562
    edited October 2012

    I have an iPad. I'll gladly give some feedback!

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    Thanks Kira for your feedback.  I know Jane appreciates you contacting her also. If you would like the link to the online survey I am happy to email that to you. Just let me know.

    NancyD, if you want to PM me with your email address I can also send you the link to the survey.  Feel free to test the app on your iPad as long as necessary before offering input.  I'm sure the developers would like feedback on any technical, display or navigational issues you run across in addition to content concerns.  Thanks for offering to help!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2012

    Linda, I'd love the link to the survey, and you know I'm a huge Jane Armer fan. Tireless worker and brilliant.

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    I'm an android user too Linda, but just wanted to take  a moment to  ask where your support groups are .

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    Kira I just sent you an email with the link to the survey.  Thanks!

    Purple32 the LE support group that I have been involved with for almost 6 years is held in Clarkson Valley, Mo which is in West St. Louis County.  We meet the second Wed of each month from 7pm - 8:30pm in the Mercy Medical building at the intersection of Clarkson and Clayton roads in West County. 

    There is a brand new support group which just started last month, currently being held in the Nursing Building of the Lewis & Clark Community College in Godfrey, Illinois which is north of metropolitan St. Louis, just over on the Illinois side, north of Alton, Illinois. They will be meeting the last Tuesday of each month at 7pm. If you are ever in our area please feel free to attend!  Let me know if you need additional info!  Smile

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    Thanks LindaLou

    I would love to see Mercy Medicals all over have this support!

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited October 2012

    LindaLou--You sent me the link to give my input to app.  I am still looking it over and have not yet responded but I will!  Thanks.  Becky

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited October 2012

    Thanks Becky! Don't feel rushed. Take the survey after you have had time to play with the app for awhile. In addition to content review, I also suggest users put the app through it's paces for navigation and technical issues. If you find any display errors or experience app crashes that is important to report. Suggestions for enhancing user friendliness or adding new features is also appreciated.

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