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Are you willing to participate in an advocacy campaign to politicians and the media by:
Writing & sending email?:
25%
Writing & mailing letters?:
14%
Making phone calls?:
14%
Signing an online petition?:
26%
Meeting face to face?:
16%
Not able or motivated to participate:
2%
Total Votes: 123
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Date Complete:
September 1, 2003
It appears that most respondents appear to prefer online
methods of participating in an advocacy campaign. This is
not a surprise since online advocacy tools, such as the one
we provide, Action Central, make the process simpler for
the end-user. This poll also reveals that an overwhelming
number
of respondents are motivated to participate in an advocacy
campaign.
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What is your PRIMARY treatment for PH?
Flolan:
27%
Remodulin:
4%
Tracleer:
24%
Sitaxsentan:
0%
Beraprost:
0%
TBC3711:
0%
Calcium
Channel Blockers:
11%
Oxygen
Only:
7%
Blood
Thinner (e.g. Coumadin):
9%
Transplant:
3%
Nitric
Oxide:
0%
Nothing:
6%
Other
(Tell Us):
5%
Total Votes: 425 |
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Date Complete:
April 1, 2003
PHCentral conducted this poll previously 3 years ago in January
of 2000 and again in February of 2001.
We continue to see a drop in the use of CCB's as a primary
treatment (27% in 2000, 20% in 2001, and 11% now). We also
see a significant drop in the use of Flolan as a primary treatment
(35% in 2001, 27% now) with a large increase in the use of
Tracleer (2% in 2001 to 24% now).
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Are you currently being treated with supplemental oxygen?
Yes:
57%
No:
42%
Total Votes: 460 |
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Date
Complete: February 1, 2003
Well over half of the respondents indicated that they are
being treated with supplemental oxygen. This indicates the
importance of addressing issues involved with the use of oxygen
for the PH patient population.
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Have you been FORMALLY placed on a lung transplant waiting
list?
Yes:
22%
No:
77%
Total Votes: 243 |
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Date
Complete: November 2, 2002
We previously conducted
this same poll in May of 2000. We were anxious to learn if
there has been a trend in PH physician's tendancy to place
their patients on a transplant waiting list. The results of
this more recent poll may indicate a slight shift away from
placing patients on a list (May, 2000 28% indicated being
on a list as contrasted with 22% in November 2002). The results
obviously do not help us understand the reasons why the doctors'
position on this may have changed. |
Do you communicate with your PH clinician via email?
No:
67%
Yes,
with doctor:
10%
Yes,
with nurse:
12%
Yes,
with both:
9%
Total Votes: 258 |
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Date
Complete: September 3, 2002
A surprisingly low
number (only one-third) of respondents indicated that they
communicate with their PH clinician via email. This number
might be considered high if we had polled both internet and
non-internet users. But our sample most likely contained a
very high percentage of regular internet users, and therefore
we might have expected a higher use of email. The low number
may reflect a lack of use of email in general among clinicians.
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Were you aware of Pulmonary Hypertension prior to diagnosis?
Yes:
12%
No:
87%
Total Votes: 399 |
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Date
Complete: June 5, 2002
Eighty-seven percent
of the respondents indicated that they were not aware of PH
prior to diagnosis. However, 12% indicated awareness. Can
this be generalized to 12% of the population being aware of
PH? What accounts for this level of awareness?
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Has your relationship status changed SINCE PH diagnosis?
No.
Still Attached or Married:
69%
No.
Still Single:
15%
Yes.
Got Engaged or Married:
4%
Yes.
Now Unattached (My Choice):
1%
Yes.
Now Unattached (His/Her Choice):
1%
Yes.
Separated (My Choice):
2%
Yes.
Separated (His/Her Choice):
1%
Yes.
Divorced (My Choice):
2%
Yes.
Divorced (His/Her Choice):
2%
Total Votes: 237 |
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Date
Complete: April 5, 2002
Eighty-four percent
of the respondents indicated no change in relationship status.
It would take a little work to determine if these numbers
vary from the non-PH or non-chronic disease populations. Any
opinions?
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How much time passed between your first symptoms and
diagnosis of PH?
Less
than 1 month:
9%
1
to 6 months:
21%
over
6 to 1 year:
12%
over
1 year to 2 yrs:
19%
over
2 yrs to 3 yrs:
10%
over
3 yrs to 5 yrs:
11%
more
the 5 yrs:
14%
Total Votes: 366 |
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Date
Complete: January 26, 2002
Remarkably, over
one-third of the respondents indicated that 2 or more years
passed between their first PH symptoms and a diagnosis of
PH. However, it is encouraging to see 30 percent diagnosed
within the first six months.
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