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.
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