Are you being treated for thyroid problems?
Yes, currently:
 40%
No, never:
 54%
Not now, but previously:
 4%
Total Votes: 254 |
|
Date
Complete: November 27, 2000
Forty-four percent
of the respondents indicated that they have been treated for
thyroid problems. Forty percent are currently being treated.
According to the New
York Thyroid Center, 20 million people in the United States
are being treated for thyroid disorders. Another study
found that the prevalence of thyroid disease (as measured
by abnormal serum TSH levels) was 11.7%. These numbers are
well below those found in our non-scientific poll.
|
Which statement applies to you regarding social security
disabilty?
Never Applied:
44%
Filling-out Application:
1%
Applied, Waiting Decision:
3%
Approved:
 41%
Denied:
 4%
Denied, in Appeal:
 5%
Total Votes: 165 |
|
Date
Complete: October 18, 2000
Since 44% of the respondents
have never applied for social security disability, it would
be interesting to learn how many of them might be eligible
if they did apply. The low number in the denied categories
(less than 10%) should be encouraging to those with PH who
are thinking of applying for benefits.
|
How would you describe the quality of the medical care
you have received for PH after diagnosis?
Excellent:
55%
Good:
17%
Satisfactory:
10%
Less than satisfactory:
9%
Wholly dissatisfied:
6%
Total Votes: 167
|
|
Date
Complete: September 17, 2000
Over half of the respondents
feel that the quality of medical care that they receive is
excellent and only 15% were not satisfied. While this is not
a scientific poll, it could be interpreted that quality of
care is generally not an issue for the PH community of patients.
|
Are
you being treated with oxygen, and if so, what delivery
systems are you using?
Not using
O2:
32%
Oxygen Concentrator:
38%
Gas Cylinder - traditional:
10%
Gas Cylinder - pulse dose:
11%
Helios Liquid Oxygen System:
8%
Total Votes: 261 |
|
Date
Complete: August 22, 2000
Over two-thirds of
the respondents report using some form of oxygen. This may
be a high rate for the community compared to the actual rate
because those who do not use oxygen may chosen not to respond.
|
How
many hours do you travel to see your PH specialist?
less than
1/2 hour:
13%
1/2 to 1 hour:
21%
over 1 to 2 hours:
17%
over 2 to 4 hours:
22%
over 4 to 8 hours:
14%
8 or more:
10%
Total Votes: 205 |
|
Date
Complete: July 13, 2000
Almost one-half of
the respondents claim to travel over 2 hours to see their
PH specialists. It will be interesting to track this over
time, assuming that the number of PH specialists increases.
|
As
a PH patient, how many hours of paid employment do
you work per week?
None:
58%
Full Time, 32 hrs or greater:
29%
8 hrs or less:
2%
9-16 hrs:
1%
17-24 hrs:
4%
24-31 hrs:
2%
Total Votes: 237 |
|
Date
Complete: June 15, 2000
Most patients do not
work. However, the majority of those that do work, work 32
hours or greater.
|
Have
you been formally placed on a lung transplant waiting
list?
Yes:
28%
No:
71%
Total Votes: 138
|
|
Date
Complete: May 15, 2000
Less than 30% of the
respondents replied that they have been placed on a lung transplant
waiting list.
|
Which
of these doctors is the PRIMARY manager of your PH?
PH Specialist
- Cardiologist:
19%
PH Specialist - Pulmonologist:
41%
PH Specialist - Pediatric Cardio. or Pulm.:
4%
Cardio., Pulm.- Speciality other than PH:
22%
Family Doc., GP, Internist, Pediatrician:
9%
Other:
2%
Total Votes: 231 |
|
Date
Complete: April 27, 2000
Over 30% of the respondents
replied that a clinician, without specific PH expertise, is
the primary manager of their PH.
|
|
|
Date
Complete: March 26, 2000
Almost 60% of the
respondents claim something other than "primary" PH as the
cause of their Pulmonary Hypertension. Another interesting
finding is that the second highest response was for the category
"Diet Drugs" demonstrating the significant impact these drugs
are having on the PH community.
We anticipate running
this poll again next year to begin tracking trends in causes
of PH.
|
How
long since your diagnosis of PH by your doctor?
Less Than
3 Months:
19%
3 Months - 1 Year:
25%
2 - 5 Years:
36%
6-10 Years:
9%
11-15 Years:
5%
Greater Than 15 years:
3%
Total Votes: 271 |
|
Date
Complete: February 27, 2000
Forty-Four percent
of the respondents are relatively new to pulmonary hypertension.
The bad news is that 120 respondents were diagnosed within
the past year. The good news is that these patients are finding
the information they need to educate themselves about PH.
|
Who
helps you with the emotional side of PH?
Psychiatrist/Counselor:
8%
Family Member/Friend:
42%
Clergyman:
5%
Medical Doctor:
6%
Other PH Patients:
26%
No One:
11%
Total Votes: 110 |
|
Date
Complete: February 2, 2000
We conducted this
poll during a two week period in which we held a guest expert
chat entitled, The
Emotional Side of PH. Those responding were able to select
multiple answers.
This poll sheds some
light on the fact that PH patients are now able to help each
other thanks to the internet. Our guess is that just 5 years
ago very few of responding patients could claim that they
were assisted emotionally by other PH patients. Today, 26%
of the responding patients are helped by other patients. Five
years ago, geography was a barrier to such support-- a barrier
that is now being erased by the internet! |
|
|
Date
Complete: January 15, 2000
Over a third of the
respondents indicate that they receive Flolan as their primary
treatment for Pulmonary Hypertension. Over a quarter indicate
that they are on calcium channel blockers. A tenth of the
reponding population are on UT-15.
Based on your responses
in the PHCentral Talk Forum, we suspect that the "Other" category
primarily contains patients being treated with coumadin. We
anticipate running this poll again next year to begin tracking
trends in PH treatments. |
