Consent to Participate in Research
You are being asked to take part in a research study. Before you begin, please read the following information carefully:
· Research Purpose: This study aims to better understand how atrial fibrillation affects symptoms, daily functioning, and quality of life for individuals living with cardiac amyloidosis. Many physicians believe that atrial fibrillation treatments do not benefit patients with cardiac amyloidosis. The study team hypothesizes that, contrary to the established belief, cardiac amyloidosis patients depend upon proper atrial function more than the average atrial fibrillation patient and stand to derive significant functional and symptomatic benefit from proper atrial fibrillation rhythm control.
· Risks and Benefits: While this study does not request or seek to collect your personally identifying information, a potential risk in participating is the loss of privacy or confidentiality. To minimize this risk, please do not provide any personally identifying information in your responses to any open-ended questions. There are no direct personal benefits or compensation for participation, though we hope the findings will improve knowledge about cardiac amyloidosis and atrial fibrillation.
· Voluntary Participation: Your participation is entirely voluntary. You may choose not to participate, or you may stop the survey at any time. Refusal to participate will not result in any loss of benefits to which you are otherwise entitled.
· Confidentiality: No information that can identify you will be requested. Your responses will remain anonymous, securely stored, and may be shared for future research purposes.
· Alternatives: The alternative to participation is simply to decline or exit the survey.
· Future Use of Data: Anonymous data from this study may be stored and used for future research.
· Questions or Concerns: If you have questions about the study or your rights as a participant, you may contact the study team at saman.nazarian@pennmedicine.upenn.edu .
By choosing "Yes" below, you indicate that you have read and understood this information and agree to take part in this research study.
Do you consent to participate in this study?
* must provide value
Yes
No
Part 1: General Information
Male
Female
Non-binary / Third gender
Other
Prefer not to say
Since you selected "other" in the question above, please specify below
please do not provide any information that may enable anyone to identify you in this textbox
What is your ethnicity? (select all that apply)
Since you selected "other" in the question above, please specify below
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Part 2: Amyloidosis and Atrial Fibrillation History
Have you been diagnosed with cardiac amyloidosis?
Yes
No
If diagnosed with cardiac amyloidosis, which type?
ATTR wild-type (age-related, without detection of abnormal gene mutations)
ATTR variant/hereditary (progressive, inherited disorder caused by a mutation in the TTR gene)
AL amyloidosis (caused by a problem with cells in the blood/bone marrow)
Not sure
How long ago were you diagnosed with cardiac amyloidosis?
< 1 year
1-3 years
3-5 years
>5 years
Have you been diagnosed with AF?
Yes
No
How long ago were you diagnosed with AF?
< 6 months
6-12 months
1-3 years
3-5 years
>5 years
What is your atrial fibrillation pattern?
Paroxysmal (your atrial fibrillation episodes come and go, terminating spontaneously or with intervention, within seven days of onset)
Persistent (your atrial fibrillation episodes last for longer than seven days and require medication or electrical cardioversion to restore a normal heart rhythm)
Long-standing persistent (you have been in continuous atrial fibrillation for longer than 12 months)
Permanent (you and your healthcare provider have stopped all attempts to restore or maintain a normal sinus rhythm)
Not sure
Was your atrial fibrillation diagnosed before or after amyloidosis?
Before
After
Around the same time
Not sure
Have you been diagnosed with stroke (brain damage detected on brain imaging, because blood flow has been permanently blocked) or a transient ischemic attack (TIA, temporary "mini-stroke" where blood flow is briefly blocked, causing symptoms to pass quickly without lasting damage)?
Yes
No
Which type of neurological events did you have?
Stroke (brain damage detected on brain imaging, because blood flow has been permanently blocked)
TIA (temporary "mini-stroke" where blood flow is briefly blocked, causing symptoms to pass quickly without lasting damage)
Both
Do you have residual symptoms from the stroke?
Yes
No
How long ago were you diagnosed with your first stroke or TIA event?
<6 months
6-12 months
1-3 years
3-5 years
>5 years
How many stroke events have you had?
How many TIA events have you had?
Part 3: Symptoms
How would you rate your symptoms before atrial fibrillation began?
None
Mild
Moderate
Severe
Partially adapted from AFEQT, Developed by AFEQT Core Team-John Spertus, MD, Mid America Heart Institute, Kansas City, MO; Paul Dorian, MD, St. Michaels Hospital, Toronto, ON; Rosemary Bubien, RN, University of Alabama, Birmingham, AL; Caroline Burk, Pharm D. M.S; Steven Lewis, PhD; Donna Godejohn, BSN, St. Jude Medical, St. Paul, MN
Part 3: Symptoms
How would you rate your current symptoms?
None
Mild
Moderate
Severe
How would you rate your symptoms after the onset of atrial fibrillation?
Better
Same
Worse
Significantly worse
Please select the symptoms that developed or worsened with atrial fibrillation? (select all that apply):
During atrial fibrillation episodes were your daily activities limited by atrial fibrillation?
Not at all
Slightly
Moderately
Quite a bit
Extremely
How often were you bothered by irregular heartbeat episodes?
Never
Daily
Weekly
Monthly
Yearly
Every few years
How much effect did atrial fibrillation episodes have on your physical activity?
Not at all
A little
Moderately
A lot
Completely prevented
How much effect did atrial fibrillation episodes have on your energy level?
Not at all
Slightly
Moderately
Quite a bit
Extremely
When you first developed atrial fibrillation how much concern did you have about it?
Not at all
Slightly
Moderately
Very
Extremely
When you first developed atrial fibrillation did the episodes of irregular rhythm interfere with your independent living?
Not at all
Slightly
Moderately
Quite a bit
Completely
When you first developed atrial fibrillation how was your overall quality of life?
Excellent
Good
Fair
Poor
Very poor
Part 4: Treatments & Rhythm Control
Examples of these medications are: metoprolol (also known as lopressor, toprol xl), carvedilol (also known as coreg, coreg cr), atenolol (also known as tenormin), bisoprolol (also known as zebeta, ziac), propranolol (also known as inderal, inderal la, innopran xl) , diltiazem (also known as cardizem, cardizem cd, dilacor xr, diltia xt), verapamil (also known as calan, calan sr, covera-hs, verelan), or digoxin (also known as lanoxin, digox, digitek).
Yes
No
Not sure
Was heart rate control effective in improving your symptoms?
Helped a lot
Helped somewhat
No change
Worse
Have you tried atrial fibrillation rhythm control therapies? Examples of these therapies include medications such as antiarrhythmic medications [such as amiodarone (also known as Pacerone or Cordarone), flecainide (also known as Tambocor), propafenone (also known as Rythmol), sotalol (also known as Betapace, Betapace atrial fibrillation or Sorine), and dofetilide (also known as Tikosyn)] or procedures including electrical cardioversion, catheter ablation, or the surgical maze procedure (also known as: maze, mini maze, Wolf procedure, TTM [totally thoracoscopic maze], hybrid procedure, or convergent procedure).
Yes
No
Not sure
Which treatments have you had to control AF? (select all that apply)
Did cardioversion help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after cardioversion (select all that apply):
How long did the cardioversion benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
How many cardioversions have you had?
1
2
3-5
5-10
>10
Did amiodarone (Pacerone or Cordarone) help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after amiodarone (Pacerone or Cordarone) initiation (select all that apply):
How long did the amiodarone (Pacerone or Cordarone) benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
Did flecainide (Tambocor) help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after flecainide (Tambocor) initiation (select all that apply):
How long did the flecainide (Tambocor) benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
Did propafenone (Rythmol) help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after propafenone (Rythmol) initiation (select all that apply):
How long did the propafenone (Rythmol) benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
Did sotalol (Betapace or Sorine) help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after sotalol (Betapace or Sorine) initiation (select all that apply):
How long did the sotalol (Betapace or Sorine) benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
Did dofetilide (Tikosyn) help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after dofetilide (Tikosyn) initiation (select all that apply):
How long did the dofetilide (Tikosyn) benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
Did catheter ablation help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after catheter ablation (select all that apply):
How long did the catheter ablation benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
How many catheter ablation procedures have you had?
1
2
3
4
5
<5
Did pacemaker implantation and atrioventricular node ablation help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after pacemaker implantation and atrioventricular node ablation (select all that apply):
How long did the pacemaker implantation and atrioventricular node ablation benefit last?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
Did surgical atrial fibrillation ablation (also known as: maze, mini maze, Wolf procedure, TTM [totally thoracoscopic maze], hybrid procedure, or convergent procedure) help your symptoms?
Significantly
Somewhat
No change
Worse
Not sure
Please select the symptoms that improved after surgical atrial fibrillation ablation (also known as: maze, mini maze, Wolf procedure, TTM [totally thoracoscopic maze], hybrid procedure, or convergent procedure) (select all that apply):
How long did the surgical atrial fibrillation ablation (also known as maze procedure) benefit last before you had recurrent atrial fibrillation?
I have never had recurrent atrial fibrillation
< 1 week
< 1 month
1-3 months
3-6 months
6-12 months
1-3 years
3-5 years
>5 years
Which treatments have you had to minimize your risk of stroke? (select all that apply)
When in the therapy window did the stroke or TIA occur (select all that apply)?
Part 5: Symptoms and Quality of Life after Rhythm Control
Not at all
Slightly
Moderately
Quite a bit
Extremely
Partially adapted from AFEQT, Developed by AFEQT Core Team-John Spertus, MD, Mid America Heart Institute, Kansas City, MO; Paul Dorian, MD, St. Michaels Hospital, Toronto, ON; Rosemary Bubien, RN, University of Alabama, Birmingham, AL; Caroline Burk, Pharm D. M.S; Steven Lewis, PhD; Donna Godejohn, BSN, St. Jude Medical, St. Paul, MN
How often are you bothered by irregular heartbeat episodes after rhythm control therapy?
Never
Daily
Weekly
Monthly
Yearly
Every few years
How much does atrial fibrillation effect your physical activity after rhythm control therapy?
Not at all
A little
Moderately
A lot
Completely prevented
How much does atrial fibrillation effect your energy level after rhythm control therapy?
Not at all
Slightly
Moderately
Quite a bit
Extremely
How concerned are you about atrial fibrillation after rhythm control therapy?
Not at all
Slightly
Moderately
Very
Extremely
How much does atrial fibrillation interfere with your independent living after rhythm control therapy?
Not at all
Slightly
Moderately
Quite a bit
Completely
How is your overall quality of life after rhythm control therapy?
Excellent
Good
Fair
Poor
Very poor
Part 6: Open-Ended Reflections
What do you wish doctors understood about patients with cardiac amyloidosis and atrial fibrillation?
please do not provide any information that may enable anyone to identify you in this textbox
Explain how atrial fibrillation affects your quality of life after rhythm control therapy:
please do not provide any information that may enable anyone to identify you in this textbox
Please describe any side effects or challenges with any of the therapies above:
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Anything else you'd like to share?
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Submit
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