Tour de Heart: Patient Experience Survey
The purpose of this survey is to collect input from people diagnosed with heart problems. Based on my lifelong journey with heart issues, I have found that traditional healthcare services don't help us to get our lives back once we leave the hospital. I would like to hear from other people dealing with heart issues and understand if there are more people like me.
I hope that together, we can share information and improve outcomes as we reach our goals and do amazing things!
Have you been diagnosed with heart issues?
If you feel comfortable sharing, please provide an overview of your heart issue:
Have you had / or will you have a surgical heart procedure or other treatment?
Procedure in the EP Lab
Implanted device (pacemaker / ICD)
Open heart surgery / procedure
Medication to treat an arrhythmia
Heart failure related
If yes, do you feel like you were given enough information about the surgery/procedure/treatment?
Yes - I felt like the information provided helped me make good choices regarding my care.
No - I felt like I didn't have a choice, but had to do what the doctor told me to do.
Maybe - My family / friends helped me understand what I needed to know.
What do you wish you had known before the procedure?
Do you ever feel scared or overwhelmed at times dealing with your heart issues?
Yes - I often think about my heart and wonder if it everything is ok. It frightens me at times.
No - I don't even think about my heart condition. I know that everything is working as it should.
Sometimes I get concerned, but then just get on with my day.
What about your condition makes you feel scared / overwhelmed?
Do you use a wearable device, such as a FitBit or Garmin, that has a heart rate feature to help you track your heart?
Yes - My device provides real-time information about my heart rate and this is useful to me.
No - I have not used wearable devices to track my heart rate.
Not yet - However, I would be interested in learning more about wearable devices.
Do you feel that you can do the same level of activity as before your diagnosis/procedure?
Yes - I do not feel any difference in my activity levels. I can be as active as I want to be.
No - I feel like my heart condition has impacted my ability to be as active as I want to be.
I don't feel safe pushing my heart to be active, so I don't even try.
Do you feel like your doctor understands your goals and helps create a plan to achieve them?
Yes - my cardiologist understands what I want to do and we have a plan to help me get there.
No - I am frustrated that my cardiologist doesn't understand and expects me to reduce my goals.
I don't know... I haven't really thought about what I want to do.
What would you most like to change/improve about your experience that will help others?
If you would like to be added to the Tour de Heart community, please provide your name and email address:
to join the Tour de Heart community and to follow my journey to cross the finish line of IRONMAN Tempe AZ on November 24th, 2019!
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