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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.
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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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