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Do you keep a patient diary? |
Total Votes83 |
Yes |
 17% |
No |
83% |
How much sleep do you get a day on average (including naps)? |
Total Votes274 |
<5 hours |
9% |
5-7 hours |
28% |
7-9 hours |
37% |
9-11 hours |
18% |
11+hours |
8% |
Accountable Care Organizations (ACO) Do you know what they are? |
Total Votes84 |
Yes |
4% |
No |
96% |
Does having and dealing with cystic fibrosis cause you to be more empathetic with other people? |
Total Votes153 |
Yes |
70% |
No |
30% |
Do you own a smart phone? (one with a camera) |
Total Votes27 |
Yes |
59% |
No |
41% |
Do you know what a QR code is? |
Total Votes211 |
Yes |
17% |
No |
83% |
Would you recommend your doctor/center? |
Total Votes143 |
Yes |
85% |
No |
15% |
Does your doctor blog? |
Total Votes72 |
Yes |
6% |
No |
36% |
I don't know |
58% |
Does your doctor Tweet? |
Total Votes74 |
Yes |
4% |
No |
30% |
I don't know |
66% |
Is your doctor on Facebook? |
Total Votes68 |
Yes |
18% |
No |
82% |
Do you or have you ever (for a period longer than three months) homeschooled your child because of CF? |
Total Votes222 |
Yes |
27% |
No |
73% |
Have you been home schooled or do you home school your children? |
Total Votes13 |
Yes |
0% |
No |
100% |
Does your center/doctor believe in early intervention in treating CF (for example daily CPT even when no pulmonary symptoms are present)? |
Total Votes404 |
Yes |
79% |
No |
8% |
I don't know |
13% |
Do you believe that Mobile health has the opportunity to deliver healthcare with lower cost and higher quality? |
Total Votes125 |
Yes |
49% |
No |
51% |
When discussing your medical situation with you, does your doctor ever admit to needing more information or not knowing the answer to your question(s)? |
Total Votes125 |
Yes |
46% |
Rarely |
26% |
No |
29% |
When discussing your treatment does your doctor ever say something like this: "I don't know, let's look that up". |
Total Votes3 |
Yes |
33% |
No |
67% |
How much time do you spend daily on your treatment regimen? |
Total Votes219 |
30 minutes or less |
16% |
31-60 minutes |
27% |
61-90 minutes |
21% |
91-120 minutes |
16% |
121-150 minutes |
7% |
151-180 minutes |
3% |
181 minutes+ |
10% |
Does your doctor have a smart phone? |
Total Votes137 |
Yes |
34% |
No |
9% |
Don't Know |
58% |
Do you own a smart phone? |
Total Votes191 |
Yes |
46% |
No |
54% |
Are you happy with your doctor/center? |
Total Votes54 |
Very Satisfied |
39% |
Satisfied |
20% |
Neutral |
19% |
Dissatisfied |
11% |
Very Dissatisfied |
11% |
On a scale of 1-10, How are you doing today? |
Total Votes143 |
1 |
3% |
2 |
3% |
3 |
3% |
4 |
6% |
5 |
13% |
6 |
8% |
7 |
13% |
8 |
18% |
9 |
13% |
10 |
20% |
Have recent FDA regulations for enzymes forced you to change your brand? |
Total Votes106 |
Yes |
56% |
No |
44% |
Do you regularly ask your doctor why a particular medication works and how it compares to others in the same class/category? |
Total Votes106 |
Yes |
50% |
No |
50% |
Has your current doctor / center become more vigilant keeping you informed about how contagious the bacteria is between CF patients (including siblings)? |
Total Votes92 |
Yes |
34% |
No |
66% |
Have you ever not taken a prescribed medication because it was too expensive--either the copay or the cost without insurance coverage was too high? |
Total Votes81 |
Yes |
64% |
No |
22% |
NA |
14% |
Have you ever stopped a prescribed medication without telling your doctor or against your doctor's recommendation? |
Total Votes145 |
Yes |
63% |
No |
32% |
NA |
5% |
Do you use a Positive or Oscillating Expiratory Pressure device in your daily airway clearance routine? (Examples: Acapella, Quake, Cornet or Flutter) |
Total Votes70 |
Yes |
33% |
No |
67% |
If you are frequently in pain from arthralgia, pleurisy, sinuses, GI problems or another cause, do you feel that it is carefully and compassionately addressed by your doctors? |
Total Votes39 |
Yes |
13% |
Sometimes |
26% |
No |
31% |
NA |
31% |
Do you participate in the main CFF fundraiser: |
Total Votes174 |
Yes |
71% |
No |
20% |
I have in the past but no longer participate |
9% |
Do you receive your primary CF care from a CF center? |
Total Votes197 |
Yes |
76% |
No |
24% |
Does your doctor actively work with you to optimize your medicine cabinet? (Pick the response that most closely fits your situation.) |
Total Votes129 |
Yes. My doctor suggests different drugs that might improve my condition, and closely monitors my dosing and response to new and old meds. |
43% |
Sometimes. My doctor goes over my meds with me, but I am the one to pursue a discussion of their effectiveness and bring ideas for change. |
39% |
No. My doctor does not converse with me about my meds aside from listing them, nor take an interest in how I feel my meds are working. |
18% |
Do you think the presence of family and/or close friends ensure better care for you when you are in the hospital? |
Total Votes132 |
Yes |
85% |
Sometimes |
10% |
No |
5% |
How often did you experience episodes of hemoptysis in the past year (defined for this question as coughing up bright red blood for several days and up to two weeks)? |
Total Votes87 |
more than 12 episodes |
3% |
6-11 episodes |
6% |
1-5 episodes |
26% |
no hemoptysis this year |
64% |
Have you become more compliant with your medical regimen since visiting CysticFibrosis.com and reading about or directly communicating with other members of the site? |
Total Votes32 |
Yes |
69% |
No |
31% |
I or my child has CF and the sweat test was: |
Total Votes91 |
Positive (>60 mEq/L) |
67% |
Borderline (40-60 mEq/L) |
14% |
Negative (<40 mEq/L) |
8% |
I do not know/remember |
11% |
Have you been able to receive or schedule your H1N1 vaccine? |
Total Votes236 |
Yes |
50% |
No |
50% |
Will you be more likely to participate in clinical trials if the "Improved Access to Clinical Trials Act" is passed? |
Total Votes48 |
Yes |
71% |
No |
29% |
How far do you travel to your CF doctor or CF Clinic? |
Total Votes103 |
10 miles (16 km) or less |
28% |
11-50 miles (17.7-80.5 km) |
43% |
51-100 miles (82-161 km) |
12% |
101-200 miles (162.5-322 km) |
10% |
More than 200 miles; More than 323 kilometers |
8% |
 |
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