What has your doctor said is the cause of your PH?
Unexplained
- "true" Primary:
 36%
Scleroderma/Lupus:
 9%
Diet
Drugs:
 19%
Cardiac
Disorder - e.g., ASD, Congenital:
 12%
Airway/Lung
disorder - e.g., COPD, Sleep Apnea:
 14%
Liver
- Portopulmonary:
 1%
HIV:
0%
Other:
5%
Total Votes: 475 |
|
Date
Complete: November 15, 2001
We conducted this
poll about a year and a half ago (see Date Complete: March
26, 2000) and we see some interesting differences in the results.
The percentage of patients reporting "true" primary pulmonary
hypertension has dropped 5%. Diet drugs and scleroderma account
for 4 of the 5 point decrease. One might argue that these
results suggest an increasing ability of physicians to attribute
a diagnosis of PH to a primary cause.
|
What is your PRIMARY health insurance coverage?
Fee-For-Service
-Traditional Indemnity Plan:
1%
Health
Maintenance Organizations -HMO:
23%
Preferred
Provider Organizations -PPO:
37%
Point
of Service - POS:
4%
Medicare:
20%
Medicaid:
3%
None:
3%
Other:
5%
Total Votes: 221 |
|
Date
Complete: September 8, 2001
HMOs and PPOs appear
to make up the majority of health insurance coverage for patients
in the PH community. It is interesting to note that traditional
fee-for-service plans cover only 1 percent of those who responded.
|
Who is your primary caregiver?
Wife:
13%
Husband:
56%
Sibling:
1%
Parent:
10%
Friend:
2%
Other
Family Member:
2%
Other:
12%
Total Votes: 186 |
|
Date
Complete: July 24, 2001
The answers to this
poll most likely reflect the patient population - mostly married
females with husbands as caregivers. The other category should
probably be explored. It would be disheartening if the majority
of other responses were from those patients who would claim
not to have a primary caregiver.
|
Which activities do you regularly do to obtain info
and support - Select ALL that apply
Read
PH-related news:
17%
Read
or write to email lists:
12%
Email
patient to patient:
11%
Read
or write to message board:
13%
Read
or write online patient diaries:
6%
Chat
online or read chat transcripts:
8%
Read
current PH research literature:
14%
Attend
local support group:
6%
Phone
patient to patient:
5%
Other?:
2%
Total Votes: 225 |
|
Date
Complete: June 2, 2001
Activity to obtain
information and support appears relatively evenly spread among
a number of options. It is not surprising that non-internet
related activities (e.g., phone and support groups) were not
selected as much as internet activities since this poll was
responded to by internet users.
|
Since diagnosis, have you been professionally treated
for depression?
Yes,
currently:
22%
No,
never:
66%
Not
now, but previously:
11%
Total Votes: 231 |
|
Date
Complete: March 24, 2001
A third of the respondents
are being or have been professionally treated for depression.
This poll underscores the importance of caring for your emotional
health while treating a chronic illness. Although a patient
may not feel that they are depressed, seeking professional
therapy may be very beneficial not only for the patient but
for those who care for the patient and other family members.
|
What is your PRIMARY treatment for PH?
Flolan:
34%
Uniprost
(UT-15):
7%
Beraprost:
2%
Tracleer
(Bosentan):
2%
Calcium
Channel Blockers:
20%
Oxygen
Only:
8%
Blood
Thinner (e.g. Coumadin):
10%
Transplant:
0%
Nitric
Oxide:
1%
Nothing:
4%
Other
(Tell Us):
6%
Total Votes: 315 |
|
Date
Complete: February 11, 2001
PHCentral ran this
poll one year ago - see below. The results of this year's
poll are interesting. About the same number of respondents
(one-third) indicated that they are primarily being treated
with Flolan. The poll indicates a slight drop in the percentage
use of UT-15 (10% last year) and a large drop in the use of
CCB's as a primary treatment (27% last year). So it appears
that as of the beginning of 2001, Flolan is used as a primary
treatment more than any other treatment available as indicated
by patients.
|
Select ALL lifestyle changes you've made as a result
of your PH diagnosis:
Moved
to new home:
4%
Stopped/reduced
working:
15%
Hired
help at home:
7%
Modified
your home:
3%
Gave
away a pet:
1%
Adopted
a pet:
2%
Learned
computer/internet:
7%
Spend
more family time:
13%
Gave
up favorite hobby:
7%
Found
new favorite hobby:
3%
Travel
more:
2%
Travel
less:
13%
Become
more spiritual:
11%
Become
less spiritual:
0%
Other
- Tell us!!:
2%
Total Votes: 186 |
|
Date
Complete: January 6, 2001
This is the first
poll that addresses lifestyle changes as a result of PH. The
initial selection of categories seems to be comprehensive
given the low "Other" response rate. The lifestyles changes
of PH patients appear to center around reducing work, spending
more time with family, traveling less, and increasing spirituality.
No respondent indicated that they became less spiritual.
|
