ELECTRONIC CONSENT: Please select your choice below.
I would like to participate in this research study.
Clicking on the "agree" button indicates that:
• You have read the information above
• You voluntarily agree to participate
Agree
Disagree
We request your permission to retain your name and contact information in a Patient Registry so that we can contact you for other studies. Rare diseases are difficult to study. Creating a Patient Registry will improve our ability to conduct research projects that can improve our understanding and management of PLCH. You can fill out this online survey without agreeing to participate in the Patient Registry.
Yes, I agree that you may include my information in the Patient Registry, and contact me in the future to participate in other research studies.
No, I do not want my information included in the Patient Registry. I do not want to be contacted for additional studies.
I would prefer to be contacted by:
Female
Male
Hispanic
Non-Hispanic
Unknown
Prefer not to answer
Black or African American
White or Caucasian
American Indian or Alaska Native
Native Hawaiian or Other Pacific Islander
Asian
Other
Prefer not to answer
Which of the following best describes your highest achieved education level?
Graduate degree (Masters, Doctorate, etc.)
Bachelor's degree
Associate degree
Some College, no degree
High school graduate, no college
Less than a high school diploma
Date of Birth
(Please enter the date in Month/Day/Year format)
Today M-D-Y
What was the approximate date when the symptoms or signs that you now know to be due to PLCH begin?
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
What was the approximate date that you were diagnosed with PLCH?
(This could be before or after the start of your symptoms)
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
What was the first sign or symptom of PLCH that led to your diagnosis?
(Check all that apply)
If you selected 'other', please specify:
How long after your symptom onset were you diagnosed with PLCH?
Less than 6 months
6 months - 1 year
1-2 years
2-3 years
3 years or more
I had no symptoms before I was diagnosed
How was your diagnosis of PLCH made?
(Check all that apply)
If you selected other, please specify:
What manifestations of PLCH have you had, either past or present?
(Check all that apply)
If you selected other, please specify
Prior to the correct diagnosis of PLCH, were you incorrectly diagnosed with a different disorder?
Yes
No
If Yes, which incorrect diagnosis were you given
If you selected other, please specify
Do you use supplemental oxygen for your symptoms?
Yes
No
If yes, to what extent do you use supplemental oxygen?
Continuously
With exercise only
With sleep only
With sleep and exercise only
What is the flow rate (liters/minute) of supplemental oxygen that you usually use with activity ?
What is the flow rate (liters/minute) of supplemental oxygen that you usually use at rest ?
What is the flow rate (liters/minute) of supplemental oxygen that you usually use during sleep ?
Do you get short of breath with activity?
Yes
No
The following best describes my shortness of breath?
Not troubled by shortness of breath except with strenuous exercise
Short of breath when hurrying on level ground or walking up a slight hill
I walk slower than most people on the level, stop after a mile or so, or stop after 15 minutes when walking at my own pace
I stop for breath after walking about 100 yards or after a few minutes on level ground
I am too breathless to leave the house, or breathless when dressing
Do you routinely use respiratory inhalers or bronchodilators?
Yes
No
Besides PLCH what other lung problems do you have?
(Check all that apply)
If you answered yes to 'Other diseases', please specify
What other symptoms do you have from your lung disease? (Check all that may apply)
If you selected other, please describe:
Have you ever had a lung function test (PFT)?
- This tests determine how much air your lungs can hold and how quickly you can move air in and out of your lungs.
Yes
Never had lung function testing
Unsure/Don't remember
How often do you have assessment of your lung function?
Every 3 - 6 months
Every 6 -12 months
Every 1-2 years
Less frequently than every two years
Don't have regular lung function testing
Unsure/Don't know
Other
If you selected other, please specify
When was your last lung function test (PFT)?
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
What was your lung function (FEV-1) on your most recent test?
FEV-1 is the Forced expiratory volume at timed intervals of 1.0 second
More than 80%
50-80%
Less than 50%
Don't remember
Are you currently a cigarette smoker?
Yes
No
If not, did you smoke cigarettes in the past?
Yes- Quit
No- Never Smoked
If you smoke or used to smoke cigarettes, please estimate the number of years that you smoked?
If you smoke or used to smoke cigarettes, how many cigarettes did you smoke in an average day?
(1 pack= 20 cigarettes)
When did you quit smoking cigarettes?
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
If you have quit smoking cigarettes, was there a reason that contributed to stopping smoking?
Check all that apply.
If you selected 'Other' for the reason you quit smoking, please specify:
What happened to your symptoms after quitting smoking?
Improved
Worsened
No Change
Was there a change in your Chest X-Ray or CT scan after you quit smoking?
Yes, improvement
Yes, worsening
No, stayed the same
Don't know/Not sure
Was there a change in your lung function after you quit smoking?
Yes, improvement
Yes, worsening
No, stayed the same
Don't know/Not sure
Yes, currently I smoke marijuana
Used to smoke in past but quit
No
Prefer not to answer
If you smoke or used to smoke marijuana, how often do or did you smoke?
Every day
1-2 times a week
1-2 times a month
Other
If you selected Other, please specify
Have you received any medication(s) other than inhalers for PLCH?
Yes
No
If yes, please tell the name of the medication (check all that apply)
If you selected Other, please specify other medications
If you received PLCH treatment, what happened to your symptoms after treatment?
Improved
Worsened
No Change
If you received PLCH treatment, what happened to your Chest X-Ray or CT scan after treatment?
Improved
Worsened
No Change
Don't know/Not sure
If you recieved PLCH treatment, what happened to your lung function tests after treatment?
Improved
Worsened
No Change
Don't know/Not sure
Have you had a lung or a heart lung-transplant evaluation?
Yes
No
Please check your current status.
Being evaluated but not currently listed
Listed for a lung or a heart lung-transplant
Denied lung or a heart lung-transplant
Undergone lung or a heart lung-transplant
If you were not considered for lung transplant, what were the reason(s)?
(check all that apply)
Please specify your other reasons:
If you have undergone transplant, please list the type of transplant and year it was done.
Right lung: Approximate date (M-D-Y)
Today M-D-Y
Left lung: Approximate date (M-D-Y)
Today M-D-Y
Both lungs: Approximate date (M-D-Y)
Today M-D-Y
Heart and Lung: Approximate date (M-D-Y)
Where was the transplant done (which hospital)?
Do you have family member(s) who also have PLCH ?
(PLCH is not known to run in families)
Yes
No
Don't Know
If Yes, please specify the affected family member or
members:
(Check all that apply)
If you selected Others, please specify:
Have you ever had a collapsed lung (pneumothorax)?
Yes
No
If yes, how many episodes of pneumothorax have you had?
1
2
3
4
5
6
More than 6
What symptoms of pneumothorax did you experience?
(Check all that apply).
Please specify your other symptoms:
Were you diagnosed with PLCH before the first episode of collapsed lung (pneumothorax)?
Yes
No
How many episodes of pneumothorax did you have prior to the diagnosis of PLCH?
1
2
3
4
5
6
More than 6
Date of first pneumothorax
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
Date of second pneumothorax
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
Date of third pneumothorax
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
Date of fourth pneumothorax
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
Date of fifth pneumothorax
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
Date of sixth pneumothorax
- Please enter the date in Month/Day/Year format.
Today M-D-Y If you don't remember the date, an estimate is fine.
Please specify the medical procedure or others if applicable:
If Other, Please specify:
Please specify if any other chemical was used
Have you ever flown by airplane?
Yes
No
Are you a member of one or more airline frequent flyer programs
Yes
No
How often do you fly, on average?
Once every 12 months
Once every 6 months
Once every 2-3 months
Once every month
Rarely
Never
Other
Approximately how many flights have you taken since you were diagnosed with PLCH?
How many of these flights were inter-continental?
Do you avoid air travel due to your lung disease?
Yes
No
If you selected other above, please specify
How has your flight frequency changed after you were diagnosed with PLCH?
No change
Decreased frequency
Increased frequency
Completely Stopped
Have you ever used supplemental oxygen in flight?
Yes
No
Have you ever experienced any of the following during air travel
(Developed only after getting on the flight)?
(check all that apply)
Did you ever have a collapsed lung (pneumothorax) during a flight or within a month of an air travel?
Yes
No
Don't know
If you had a collapsed lung during a flight, what were the symptoms that you might have experienced?
(Check all that apply).
What specific kind of plane did you board when you had the first flight related pneumothorax?
Propeller plane
Small or Regional Jet
Large or Full sized Jet
Don't remember
Please specify the boarding city of the flight on which this pneumothorax happened
Please specify the destination city of the flight on which this pneumothorax happened
How long was the flight that was associated with your pneumothorax (estimated hours)?
Was this a non-stop flight?
Yes
No
If no, how many connections did you make on that day?
1
2
3
More than 3
On which segment do you think the pneumothorax happened?
1st
2nd
3rd
Other
At what point in the flight do you feel that your pneumothorax occurred?
Prior to take off
Ascending
Cruise Altitude
Descending
After landing
Did you have any symptoms 24-48 hours prior to getting on the plane that were different from or worse than your usual symptoms of PLCH?
Yes
No
Was PLCH diagnosed prior to the flight related pneumothorax?
Yes
No
Was the flight crew aware you were having difficulty?
Yes
No
How were you managed on the plane?
No treatment
Oxygen supplementation
Emergency plane landing
Other
Were you hospitalized as a consequence of the flight related pneumothorax?
Yes
No
If yes, how many days did you stay in the hospital?
Less than 1 day
1-2 days
3-7 days
1-2 weeks
More than 2 weeks
What treatment did you receive for this pneumothorax?
(check all that apply)
Please specify other treatments
How many days after a pneumothorax were you told it was safe to fly?
No recommendations given
One day
1 week
2 weeks
1 month
>1 month
Told to avoid flying in the future
Didnot have a pneumothorax
Will you take flights in future?
Yes
No
Only if it's an emergency
Is there anything else that you would like to tell us about air flight issues or PLCH?
Have you reviewed your answers?
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Thank you.
Yes
No