Exploration of Possible Interest in a Cholesterol

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Experiences with Antibiotics and
Other Treatments for Rheumatic
Diseases:
Patient Survey
Prepared for:
Road Back Foundation
November 11, 2005
J25304
Table of Contents
Background & Objectives. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Sample & Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Study Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Key Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Initial Conclusions and Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Detailed Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Profile of Respondents with Rheumatic Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Antibiotic Use Among Respondents with Rheumatic Conditions . . . . . . . . . . . . . . . . . . . . . 26
Use of Other Medications and Treatments by Qualified Respondents . . . . . . . . . . . . . . . . . . 33
Profile of Respondents for Qualified Respondents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
Access to Physicians to Initiate Treatment with Antibiotics . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
Initial Effects of Antibiotic Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Effects of Antibiotic Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
Side Effects from Antibiotic Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62
Comparing Traditional Medication with Antibiotics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
Likelihood to Recommend Antibiotic Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Insurance Status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75
Respondent Profile . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79
2
Background
• Forty-three million Americans have been diagnosed
with arthritis or other rheumatic conditions. (CDC, 2005)
• Another 23 million people have chronic joint symptoms
but have not been diagnosed. (CDC, 2005)
• The pathophysiology of rheumatic disease remains
incompletely understood. (Langevitz, P., et al., 2000)
• An infectious etiology of the disease has long been
hypothesized, but not proven. (Langevitz, P., et al., 2000)
• Despite insufficient evidence for the infectious nature of
this condition, several antibiotics have been
investigated in the treatment of rheumatic diseases.
(Langevitz, P., et al., 2000)
3
Background, continued
• The use of antibiotics for rheumatoid disease is different
from the traditional manner in which antibiotics are
prescribed. (Road Back Foundation, 2005)
• Academic studies show statistically significant positive
findings in using antibiotics to treat rheumatic diseases.
(Stone, M., et al., 2003;Tilley, B.C., et al., 1995)
• Most of these studies deal with the efficacy of the drugs
and side-effects that might come with an antibiotic
regimen. (Stone, M., et al., 2003)
• Little is known about how rheumatic patients’ overall
quality of life is affected by antibiotics or about other
experiences related to treatment with antibiotics.
• While not a commonly known or understood treatment, the
American College of Rheumatology (ACR) includes
information on their website about treating rheumatic
diseases with antibiotics.
4
Project Objectives
• To understand the impact of antibiotic treatment on
the quality of life of patients with rheumatic diseases.
• To build an educational campaign, based on this
understanding, for patients and physicians about the
potential benefits of antibiotic treatment for rheumatic
conditions.
• To stimulate more research on the use and impact of
antibiotics for these conditions.
5
Research Objectives
• To understand circumstances concerning the
initiation of an antibiotic regimen to treat rheumatic
conditions.
• To understand the impact of antibiotic treatment on
the lives of rheumatic sufferers.
• To explore patient awareness of their physician’s
knowledge about the use of antibiotics to treat
rheumatic conditions.
6
Sample and Methodology
• This survey was conducted online.
• Banners were posted on websites relevant to people with rheumatic
conditions.
• The Road Back Foundation sent out email invitations to people on their
email lists.
• Interviews were conducted between October 3, 2005 and October 21,
2005.
• A total of 452 respondents with rheumatic conditions completed the
survey.*
– Eligible respondents (N=198) participated in a longer survey. They are
defined as:
• Diagnosed with Rheumatic Arthritis or Scleroderma
• On antibiotic regimen for at least 1 month
• Over the age of 18
• In this report, only individuals with rheumatic conditions are included and
referred to as “respondents”. The individuals who meet the above criteria
are referred to as “qualified respondents”.
7
*An additional 47 respondents logged onto the survey but did not have rheumatic conditions.
Breakdown of Respondents
N
%
452
100
198
44
With Rheumatoid Arthritis
149
33
With Scleroderma
49
11
Respondents with Rheumatic Conditions
Qualified Respondents
8
Limitations of the Study
9
Limitations
• Due to the method in which the sample was recruited,
caution is needed when interpreting the data.
• Passive recruitment and snowball sampling do not allow for
generalizing the results to the population of rheumatic
sufferers or those on an antibiotic regimen.
• Findings should be considered an exploratory examination
of experiences of self-selected rheumatic sufferers on an
antibiotic treatment regimen.
• A study with a random sample of rheumatic sufferers is
needed to see if the results in this study could be
generalized to the entire population.
10
Key Findings
11
Key Findings
1.
The Internet has played an important role in learning about and
initiating antibiotic treatment for qualified respondents.
–
–
2.
Almost half (47%) of qualified respondents first learned about antibiotic treatment
through the Internet
29% used the Internet to find a doctor who would treat them with antibiotics
According to these respondents, physicians neither recommend
nor have expertise about antibiotic treatment.
–
–
–
–
–
Half of qualified respondents report that it was difficult to find a doctor who would treat
them with antibiotics; many (39%) patients provided information to their doctor about
antibiotic treatment
Only 6% of qualified respondents first learned about the use of antibiotics to treat
their condition through a healthcare professional
Only 4% of respondents taking antibiotics for their rheumatic condition started
antibiotic treatment because their doctor recommended it
Among respondents who never took antibiotics to treat their rheumatic condition, only
13% report that their doctor has ever mentioned this type of treatment to them
20% of respondents with a rheumatic condition rate their doctor as not at all
knowledgeable about this form of treatment
12
Key Findings
3. A desire to avoid side effects associated with other treatments was
the major impetus behind the initiation of antibiotic treatment
among these respondents.
– 76% of respondents with rheumatic conditions started antibiotic treatment because
they heard that they work well and have fewer side effects
– 66% of respondents with rheumatic conditions started antibiotic treatment because
they did not want to side effects associated with other treatments
4. Indications of the positive impact of antibiotic treatment are clear
and dramatic among these respondents and are reported to be
responsible for considerably more improvement than traditional
prescription medications.
– Among qualified respondents, since starting antibiotic treatment::
•
•
•
•
89% have experienced positive improvements in their disease; most (77%) within 6 months of initiating
treatment
82% report a reduction in pain
80% found it easier to manage daily routines and activities
65% report a reduction in the severity of their condition
– In the following areas, most qualified respondents say that antibiotic treatment has
helped to some degree, more so than ascribed to traditional medication:
•
•
•
Improving quality of life (94% antibiotic treatment vs. 54% traditional medication)
Increased ability to function at home (94% antibiotic treatment vs. 57% traditional medication)
Reduced fatigue (93% antibiotic treatment vs. 38% traditional medication)
– Among qualified respondents who have also taken traditional medications:
•
•
Overall, half of respondent say they are taking less medication than prior to antibiotic treatment
78% say that antibiotics were more tolerable to take than traditional medications
13
Key Findings
5. Although respondents report numerous positive benefits, antibiotic
treatment is not without its drawbacks such as an initial worsening of
symptoms, the need to fine tune treatment, and ongoing side effects.
–
–
–
–
–
Almost half of qualified respondents (47%) had an initial worsening of symptoms after
starting antibiotic treatment
58% have changed medication or adjusted dosage to fine tune treatment
Most (72%) have experienced some side effects, the most common being skin
discoloration, dizziness, yeast infection, and increased sun sensitivity or sun burn
While most of these side effects were moderate or mild, for many they continue to be a
problem
Most respondents who still suffer from side effects (76%) say that they do so because
the benefits outweigh these problems
6. Despite side effects, the participants in this survey were enthusiastic
about their experiences and the vast majority (90%) would be very or
extremely likely to recommend antibiotic treatment to another person
suffering from their condition.
14
Key Findings
• Participants in this research are sufferers of rheumatic
conditions, many of whom have rheumatoid arthritis or
scleroderma and have been on antibiotic treatment for
at least one month (qualified respondents).
• While not able to generalize to the larger population
of sufferers, these data present an interesting
perspective of a group of sufferers who are currently
taking antibiotics to treat their rheumatic condition.
• These data suggest the need for additional analysis
concerning the potential positive impact of antibiotic
treatment on the lives of sufferers of rheumatoid
arthritis and scleroderma.
15
Initial Conclusions and Recommendations
16
Initial Conclusions and
Recommendations
• The Internet represents an important educational and referral tool
for people who want to learn more about antibiotic treatment for
rheumatic conditions or who need to find a doctor who will treat
them with antibiotics.
• There appears to be a need for greater professional education
aimed at physicians and other health care professionals about the
benefits of antibiotic treatment for rheumatic condition and how to
talk to their patients about this option.
• Patients who are taking antibiotics to treat their rheumatic conditions
appear to be very strong advocates for the treatment. These
patients could provide physicians and other interested patients with
first-hand accounts of the efficacy of the treatment.
• These data point to the need for additional research on patients with
rheumatic disease to additionally assess the impact of antibiotic
treatment on the lives of patients.
17
Detailed Findings
18
Profile of Respondents with Rheumatic Conditions
19
The majority of respondents have been diagnosed with
rheumatoid arthritis.
Has a doctor ever diagnosed you with any of the following conditions?
Respondents are all respondents with rheumatic conditions (n=452)
Respondents with Rheumatic
Conditions (n=452)
% Yes
Q300
Rheumatoid Arthritis
62
Scleroderma
20
Lupus
10
Polymyositis
4
Other Rheumatic Disease*
23
Lung Disease
6
Cancer
4
Diabetes
4
Heart Disease
3
Multiple Sclerosis
*
Hypothyroidism
2
Other Disease**
16
*Other Rheumatic Diseases include: Sjogren’s Syndrome, Raynaud’s, Fibromyalgia
**Other Diseases include: Obesity, Leukemia, Infertility
20
Most respondents primarily see a rheumatologist for
their condition.
What kind of physician do you primarily see for your rheumatic condition?
Respondents are all respondents with rheumatic conditions (n=452)
3%
6%
Rheumatologist
2%
Primary Care Doctor
58%
4%
Naturopathic Physician
Osteopathic Physician
27%
Another Kind of
Physician
Do Not See a Physician
Q325
21
About 1 in 4 respondents have been diagnosed
for more than 10 years.
How long ago were you diagnosed with your rheumatic conditions?
Respondents are all respondents with rheumatic conditions (n=452)
20%
23%
22%
13%
11%
Less than 1 year
9%
1-2 years
3-5 years
Rheumatic Condition
Q315
6-10 years
11-15 years
More than 15
Rheumatoid Arthritis Scleroderma
(n=452)
(n=273)
(n=88)
Less than 3 Years (Net)
31%
32%
28%
3 to 10 Years (Net)
46%
41%
59%
Greater than 10 years (Net)
22%
26%
13%
22
For more than one third of respondents, their
condition is very or somewhat severe.
Please rate the current severity of your rheumatic condition?
Respondents are All respondents with rheumatic conditions (n=452)
28%
25%
28%
11%
Very Severe
7%
Somewhat Severe
Moderate
Rheumatic Condition
Q320
Mild
No Symptoms or
difficulty
Rheumatoid Arthritis Scleroderma
(n=452)
(n=273)
(n=88)
Severe (Net)
37%
37%
30%
Mild/No Symptoms (Net)
35%
34%
41%
23
1 in 5 of respondents feels their doctor is not at all
knowledgeable about antibiotic use to treat their
conditions.
How would you rate your doctor’s knowledge about antibiotic treatment for your rheumatic condition?
Base: Respondents with rheumatic conditions with doctors (n=438)
15%
11%
12%
12%
Knowledgeable
Somewhat
Knowledgeable
Not at all Knowledgeable
20%
30%
Q330
Extremely
Knowledgeable
Very Knowledgeable
Not sure
24
Even among qualified respondents, 1 in 5 believes their doctor
is not at all knowledgeable about antibiotic use to treat their
conditions.
However, qualified respondents are more likely to rate their
doctor as extremely knowledgeable than are all respondents:
How would you rate your doctor’s knowledge about antibiotic treatment for your rheumatic condition?
Base: Qualified respondents who see a doctor (n=197)
20%
3%
12%
20%
Extremely
Knowledgeable
Very Knowledgeable
Knowledgeable
13%
Somewhat
Knowledgeable
Not at all Knowledgeable
Not sure
32%
Q330
25
Antibiotic Use Among Respondents
with Rheumatic Conditions
26
The majority of the respondents have taken antibiotics
to treat their condition. 3 out of 5 are currently doing so.
Have you ever taken or are you currently taking antibiotics to treat your rheumatic condition?
Respondents are all respondents with rheumatic conditions (n=452)
71% have ever taken antibiotics to
treat their rheumatic condition
16%
28%
Yes, but NOT currently
Yes, currently taking
No
56%
Q335
27
Most respondents currently taking antibiotics have been
taking them for a year or longer.
How long have you been taking antibiotics to treat your rheumatic condition?
Respondents are those currently taking antibiotics (n=251)
63%
37%
28%
17%
1%
< a week
Q345
15%
16%
18%
4%
1 week to < 1 month to 6 months to 1 year to < 3 3 years to <
1 month
< 6 months
< 1 year
years
5 years
5 years or
more
28
Reasons why people with rheumatic conditions take
antibiotics:
Which of the following describe why you decided to take antibiotics to treat your rheumatic condition?
Respondents are rheumatic sufferers who ever took antibiotics (n=323)
Rheumatic sufferers who
ever took antibiotics (n=289)
%
Q350
I heard that antibiotics can work well and have fewer side effects than
other treatments.
76
I did not want the side effects associated with other treatments.
66
Other treatments did not work for my condition.
30
I know one or more people with rheumatic disease treated successfully
with antibiotics.
30
I had side effects from other treatments that were not acceptable to me
or that I could tolerate.
25
Other treatments were not as effective as I expected.
24
I wanted a more affordable treatment than other available treatments.
17
My doctor recommended antibiotic treatment.
14
Another healthcare professional recommended antibiotic treatment.
9
Other
14
29
Among those respondents who NEVER took antibiotics,
only 13% indicated that their physician had ever
mentioned this treatment to them.
Has your doctor ever mentioned treating your rheumatic condition with antibiotics?
Respondents are rheumatic sufferers who have never taken antibiotics (n=127)
2%
13%
Yes
No
Not Seeing a Doctor
85%
Q340
30
Most respondents who stopped taking antibiotics were
on this regimen for a year or more before they stopped.
How long were you taking antibiotics to treat your rheumatic condition before you stopped?
Respondents are rheumatic sufferers who have taken antibiotics but NOT currently (n=72)
51%
SMALL BASE:
Interpret results with
CAUTION
32%
22%
0%
< a week
Q355
6%
19%
11%
1 week to 1 month to 6 months 1 year to < 3 years to
< 1 month < 6 months to < 1 year
3 years
< 5 years
8%
5 years or
more
31
Reasons why people with rheumatic conditions stopped
taking antibiotics:
Which of the following describe why you decided to stop taking antibiotics to treat your rheumatic condition?
Respondents are rheumatic sufferers who ever took antibiotics, but NOT currently (n=72)
Rheumatic sufferers who
have taken antibiotics but
stopped (n=72)
%
I felt better or felt my condition was very much improved
35
Did not feel that it was working
29
Could not tolerate the side effects
18
My doctor said that additional treatment was not needed at this time
13
Found a treatment that worked better for me
11
Felt the cost was more than I could afford
4
Other
22
SMALL BASE: Interpret
results with CAUTION
Q360
32
Use of Other Medications and Treatments by
Qualified Respondents
33
Besides antibiotics, most qualified respondents have
taken other medications for their rheumatic condition.
What other types of medications you have taken to treat your rheumatic condition?
Qualified respondents who have taken medications
EVER TOOK
CURRENTLY TAKING
Total
Qualified
(n=198)
%
Rheumatoid
Arthritis
(n =149)
%
Scleroderma
(n =49)
%
Total
Qualified
(n=189)
%
Rheumatoid
Arthritis
(n =147)
%
Scleroderma
(n =42)
%
NSAIDS/Anti-inflamatories
(ex. Naproxen, Celebrex)
79
87
55
29
31
21
Over-the-counter pain
medication (ex. Aspirin,
Tylenol)
73
75
67
37
37
33
Steroids (ex. Prednisone)
55
60
39
21
24
10
Chemotherapeutics (ex.
Methotrexate)
37
44
16
6
7
2
Prescription pain medication
(ex. Darvon, Percoset)
36
35
41
16
13
29
Antimalarials (ex. Plaquenil)
31
36
16
9
11
2
Anti-TNF’s (ex. Enbrel,
Remicade,Humira)
12
15
2
5
7
-
None of these
5
1
14
32
30
38
Name of Medication
SMALL BASE for Scleroderma: Interpret results with CAUTION
Q400 & 405
34
Qualified respondents are also trying other types of
treatments/therapies for their rheumatic conditions.
What kinds of complementary therapies do you use, if any?
Respondents are all qualified respondents (n=198)
Types of complementary therapies
Total Qualified
(n=198)
%
Rheumatoid
Arthritis
(n=149)
%
Scleroderma
(n=49)
%
Vitamins, supplements and/or herbal remedies
75
77
71
Exercise, aerobic strengthening and/or stretching
59
60
53
Dietary changes and approaches
54
56
47
Physical approaches like massage, acupuncture, and
chiropractic
34
34
33
Psychological/Spiritual approaches like relaxation,
meditation or visualization
28
30
22
Prescription medication (ex. ACE inhibitor, anti-reflux,
calcium channel blocker)*
22
7
67
Other complementary therapies not listed here
14
13
18
None
7
7
4
SMALL BASE with Scleroderma: Interpret results with CAUTION
Q410
*Note: Exact wording of response set is as follows:
Complementary prescription medication (ex. ACE inhibitor,
anti-reflux, calcium channel blocker
35
Profile of Antibiotic Use for Qualified Respondents
36
For qualified respondents, rheumatologists tend to
start the antibiotic regimen.
What type of doctor started you on antibiotics?
Respondents are all qualified respondents (n=198)
Rheumatologist
9%
45%
2%
Primary Care Doctor
Naturopathic Physician
6%
Osteopathic Physician
7%
31%
Another Kind of
Healthcare Professional
Another Kind of
Physician
Q620
37
More than half started treatment 2 years or less after
their diagnosis.
How long have you had rheumatic condition before you started treatment with antibiotics?
Respondents are all qualified respondents (n=198)
Total Qualified
(n=198)
Rheumatoid
Arthritis (n=149)
56%
Scleroderma
(n=49)
39%
31% 29%
33%
25%
22%
16% 17%
12%
8% 8% 6%
8% 8%
6%
9%
11%
2%
Less than 1 year
Q600
1-2 years
3-5 years
6-10 years
11-15 years
More than 15
SMALL BASE for Scleroderma: Interpret results with
CAUTION
38
3 out of 5 qualified respondents use the brand name of
their antibiotic medication.
Do you currently take a generic or brand name antibiotic to treat your rheumatic condition?
Respondents are all qualified respondents (n=198)
Total Qualified
(n=198)
76%
Rheumtoid
Arthritis (n=149)
61% 56%
36%
Scleroderma
(n=49)
41%
22%
3% 3% 2%
Generic
Brand Name
Not Sure
SMALL BASE for Scleroderma: Interpret results with CAUTION
Q500
39
The majority of the qualified respondents use
Minocycline.
Which of the following antibiotics are you currently taking to treat your rheumatic condition?
Respondents are all qualified respondents (n=198)
Total Qualified
(n=198)
82% 83% 82%
Rheumtoid
Arthritis (n=149)
Scleroderma
(n=49)
11%
Minocycline
14%
13%
6%
Doxycycline
9%
7%
Clindamycin
12%
11%
8%
2% 1% 4%
Tetracycline
Other antibiotic
SMALL BASE for Scleroderma: Interpret results with CAUTION
Q505
40
Over half of the qualified respondents say their doctor
has modified their antibiotic treatment to fine tune its
effectiveness.
Have your doctor and you changed your antibiotic medication or adjusted the dosage to fine tune your
treatment?
Respondents are all qualified respondents (n=198)
Total Qualified
(n=198)
Rheumtoid
Arthritis (n=149)
58% 58% 57%
Scleroderma
(n=49)
41% 41% 43%
1% 1% 0%
Yes
No
Not Sure
SMALL BASE for Scleroderma: Interpret results with CAUTION
Q510
41
An overwhelming majority of the qualified respondents (94%) did
not learn about the use of antibiotics from healthcare
professionals and the internet educated almost half of them
(47%) about this treatment.
How did you first learn about the use of antibiotics to treat rheumatic condition?
Respondents were all qualified respondents (n=198)
29%
3%
6%
5%
10%
Healthcare
Professional
Another Patient
A friend
Internet
Books/Articles
47%
Other
Q615
42
Access to Physicians to Initiate Treatment with
Antibiotics
43
Half of qualified respondents had difficulty finding a
doctor that would treat their condition with antibiotics.
How easy or difficult was it for you to find a doctor who would treat your rheumatic condition with antibiotics?
Respondents were all qualified respondents (n=198)
Total
Qualified
(n=198)
Rheumatoid
Arthritis
(n=149)
Scleroderma
(n=49)
37%
23%
28% 26%
25%
26%
20%
16%
SMALL BASE for
Scleroderma:
Interpret results
with CAUTION
18%17% 20%
7%
lt
iff icu
D
y
r
Ve
sy
ult
or Ea
Diff ic
n
t
l
u
Di ffi c
r
e
h
t
Nei
Total Qualified
(n=198)
Difficult (Net)
Q625
24%
51%
Easy
Very
7% 6%
E asy
Rheumatoid Arthritis Scleroderma
(n=149)
50%
(n=49)
53%
44
Easy (Net)
25%
24%
27%
Many qualified respondents (80%) had to educate their
doctors or search for another one, in order to find a
physician to treat them with antibiotics.
How did you find a doctor who would treat you with antibiotics?
Respondents are all qualified respondents (n=198)
Total Qualified
(n=198)
%
Rheumatoid
Arthritis
(n=149)
%
Scleroderma
(n=49)
%
Provided my current doctor with information about
antibiotic treatment
39
38
43
Found one through the internet
29
28
33
Found one through books or other educational
materials
12
9
22
Was referred by a friend or a family member
11
9
16
The doctor treating my disease suggested antibiotics
8
9
4
Was referred by another doctor
6
7
2
Other
14
13
16
Q630
80%
SMALL BASE with Scleroderma:
Interpret results with CAUTION
45
Almost 2 out of 5 qualified respondents had to travel a
considerable distance to find a doctor that would treat
them with antibiotics.
Did you have to travel a considerable distance to find a doctor who would treat your rheumatic condition with
antibiotics?
Respondents are all qualified respondents (n=198)
38%
Yes
No
62%
Q635
46
Initial Effects of Antibiotic Use
47
About half of qualified respondents experienced
worsening of symptoms after starting antibiotic
regimen.
Did your symptoms worsen at the start of antibiotic treatment?
Respondents are all qualified respondents (n=198)
11%
47%
Yes
No
Not Sure
42%
Q710
48
Over two thirds (67%) found that they took less
medication overall or stopped taking other
medications completely.
Since you started taking antibiotics, has there been any change in the frequency with which you take the following?
Respondents are all qualified respondents (n=varies per medication taken)
Taking More
Often
%
Taking
about the
same
%
Taking Less
Often
%
Stopped
taking
%
The amount of medication I take, overall
(n=198)
5
17
55
12
NSAIDs/Anti-inflammatories (n=148)
1
17
25
57
Antimalarials (n=52)
-
23
8
69
Steroids (n=107)
4
7
28
61
Chemotherapeutics (n=68)
-
9
13
78
Anti-TNF’s (n=27)
-
33
7
59
Prescription pain medication (n=90)
7
14
22
34
Over-the-counter pain medication (n=160)
2
17
49
33
Type of Medication
Q415
49
Effects of Antibiotic Treatment
50
9 out of 10 qualified respondents experienced positive
changes or improvements after starting antibiotics.
Have you experienced any positive changes or improvements in your disease after starting
antibiotic treatment?
Respondents are all qualified respondents (n=198)
8%
3%
Yes
No
Too Soon to Tell
89%
Q700
51
Almost half of qualified respondents saw
improvements in their condition within 3 months of use
of antibiotics.
How long were you taking antibiotics before you began to notice positive changes or improvements with
your disease?
Respondents are all qualified respondents (n=198)
47%
29%
19%
3%
Saw No
Improvements
21%
10%
8%
Too Soon to
tell
Within a Month
Within 3
Months
Within 6
Months
Within 1 year
6%
Within 2 years
5%
After 2 years
Q705
Note: Question was asked to respondents who saw improvement (n=176), but total was recalculated to include all qualified respondents (n=198)
52
Before antibiotic treatment, 79% of qualified
respondents reported severe levels of pain, compared to
only 17% after antibiotic use.
Please indicate the level of pain or discomfort from you rheumatic condition BEFORE and AFTER
antibiotic treatment.
Respondents are all qualified respondents (n=198)
43%
36%
37%
26%
13%
4%
Very Severe
20%
15%
4%
Somewhat
Severe
Moderate
Mild
2%
None
Level of
pain/discomfort
BEFORE taking
antibiotics
Level of
pain/discomfort
AFTER taking
antibiotics
Very Severe/Somewhat Severe (net) of pain before antibiotics: 79%
53
Q715
Very Severe/Somewhat Severe (net) of pain after antibiotics: 17%
Levels of pain/discomfort BEFORE and AFTER
antibiotic treatment for qualified respondents
with rheumatoid arthritis and with scleroderma.
Please indicate the level of pain or discomfort from you rheumatic condition BEFORE and AFTER antibiotic treatment.
Respondents are qualified respondents with
rheumatoid arthritis (n=149)
Respondents are qualified respondents
with scleroderma (n=49)
43%
43%
36%
37%
35%
35%
26%
20%
13%
Very Severe
14%
15%
4%
4%
Somewhat Severe
Moderate
Mild
2%
None
Legend:
Q715
Level of pain/discomfort BEFORE antibiotics
Level of pain/discomfort AFTER antibiotics
24%
22%
12%
4%
Very Severe
4%
Somewhat Severe
Moderate
SMALL BASE for
Scleroderma: Interpret
results with CAUTION
Mild
6%
None
54
4 out of 5 qualified respondents saw a decrease in
pain/discomfort after taking antibiotics.
Please indicate the level of pain or discomfort from you rheumatic condition BEFORE and
AFTER antibiotic treatment.
Respondents are all qualified respondents (n=198)
15%
82%
Pain Decreased
Pain Stayed the
Same
3%
Pain Increased
Pain Decrease
Q715
Pain Stayed Same Pain Increased
Rheumatoid Arthritis (n=149)
85%
11%
3%
Scleroderma (n=49)
73%
24%
2%
55
Severity ratings dropped from 77% before
antibiotics use to 32% after antibiotic use.
Please rate the severity of your rheumatic condition BEFORE and AFTER antibiotic treatment.
Respondents are all qualified respondents (n=198)
43%
34%
Severity BEFORE
taking antibiotics
32%
26%
20%
17%
12%
10%
6%
Severity AFTER
taking antibiotics
1%
Very Severe
Somewhat
Severe
Moderate
Mild
None
Very Severe/Somewhat Severe (net) before antibiotics: 77%
Q320&Q605
Very Severe/Somewhat Severe (net) after antibiotics: 32%
56
Severity BEFORE and AFTER antibiotic treatment
for qualified respondents with rheumatoid
arthritis and with scleroderma.
Please rate the severity of your rheumatic condition BEFORE and AFTER antibiotic treatment.
Respondents are qualified
respondents with rheumatoid
arthritis (n=149)
Respondents are qualified respondents with
scleroderma (n=49)
44%
39%
35%
34%
34%
29%
27%
25%
20%
20%
17%
13%
9%
18%
14%
10%
6%
5%
0%
Very Severe
Somewhat
Severe
Moderate
Mild
Legend:
Level of Severity BEFORE antibiotics
Q320&Q605
Level of Severity AFTER antibiotics
None
Very Severe
Somewhat
Severe
Moderate
Mild
SMALL BASE for
Scleroderma: Interpret results
with CAUTION
2%
None
57
Two thirds of qualified respondents saw the severity of
their condition decrease after taking antibiotics while a
third saw no change.
Severity of Condition Before and After Antibiotics
Respondents are all qualified respondents (n=198)
33%
Decreased
Severity
Increased
Severity
No Change
65%
2%
Severity Decrease
Q320&Q605
No Change Severity Increased
Rheumatoid Arthritis (n=149)
68%
30%
2%
Scleroderma (n=49)
55%
43%
2%
58
Level of difficulty/ease for maintaining usual or daily routines
and activities BEFORE and AFTER antibiotic treatment for
qualified respondents with rheumatic conditions.
How easy or difficult was it for you to maintain your usual daily routines and activities BEFORE and
AFTER antibiotic treatment?
Respondents are all qualified respondents (n=198)
BEFORE
taking
antibiotics
AFTER taking
antibiotics
48%
34%
34%
28%
14%
4%
Very Difficult
Q610&Q720
20%
14%
3%
Difficult
Neither Difficult
nor Easy
Easy
1%
Very easy
59
Level of difficulty/ease for maintaining usual or daily routines and
activities BEFORE and AFTER antibiotic treatment for qualified
respondents with rheumatoid arthritis and with scleroderma.
How easy or difficult was it for you to maintain your usual daily routines and activities BEFORE and AFTER antibiotic
treatment?
Respondents are all qualified respondents
with rheumatoid arthritis (n=149)
Respondents are all qualified respondents with
scleroderma (n=49)
SMALL BASE for
Scleroderma: Interpret results
with CAUTION
50%
43%
36%
32%
13%
Very Difficult
28%
Legend:
Neither Difficult nor
Easy
Easy
14%
12%
6%
Very Difficult
Difficult
Neither Difficult nor
Easy
Level of difficulty/ease in maintaining usual or daily routines and activities BEFORE antibiotics
Q610& Q720
4%
2%
0%
Very Easy
27%
22%
19%
3%
Difficult
31%
15%
3%
39%
Level of difficulty/ears in maintaining usual or daily routines and activities AFTER antibiotics
Easy
Very Easy
60
The majority of the qualified respondents (80%) found it
easier to manage their daily routines after starting
antibiotic treatment.
Difficulty in managing daily routines before and after antibiotics
Respondents are all qualified respondents (n=198)
2%
18%
Found managing
daily routines more:
More Difficult
Easier
No Change
80%
Easier
Q610&720
No Change
More Difficult
Rheumatoid Arthritis (n=149)
83%
15%
2%
Scleroderma (n=49)
71%
29%
61
Side Effects from Antibiotic Treatment
62
Almost 7 out of 10 qualified respondents have
experienced side effects due to their antibiotic use.
Have you ever experienced any of the following side effects due to taking antibiotics to treat rheumatic
condition?
Respondents are all qualified respondents (n=198)
Total Qualified
(n=198)
%
Rheumatoid
Arthritis
(n=149)
%
Scleroderma
(n=49)
%
Experienced ANY of the following side effects
72
72
71
Skin Discoloration
32
27
47
Dizziness
29
31
21
A yeast infection
26
26
29
Increased sun sensitivity or sun burn
26
26
29
Nausea
22
23
20
Teeth discoloration/staining
2
2
-
GI/esophageal side effects
2
3
-
Other side effects not mentioned
5
4
8
Did NOT experience ANY of these side effects
28
28
29
Q800
SMALL BASE with Scleroderma: Interpret results
with CAUTION
63
Among those qualified respondents who experienced side
effects, most were moderate or mild.
How severe were these side effects due to taking antibiotics?
Respondents are rheumatic sufferers who have experienced specific side effects (n=varies per side effect)
Types of Side Effects
Severe
(net)
%
Very
Severe
%
Somewhat
Severe
%
Moderate
%
Somewhat
Mild
%
Very
Mild
%
Mild
(net)
%
Yeast Infection (n=52)
23
6
17
42
27
8
35
Skin discoloration
(n=63)
29
6
22
33
32
6
38
Increased sun
sensitivity or sun burn
(n=52)
13
8
6
60
21
6
27
Dizziness (n=57)
9
2
7
42
39
11
49
Nausea (n=44)
5
-
5
39
39
18
57
SMALL BASES: Interpret
results with CAUTION
Q805
28% DID NOT experience any side effects from antibiotics
64
2 in 5 qualified respondents who had side effects did not change
anything to address these problems; 28% adjusted their antibiotic
treatment in some way; and 1 in 3 started another medication or
supplement.
Which of the following, if any, have you done to address side effects of antibiotics?
Respondents are rheumatic sufferers who have experienced specific side effects from antibiotics (n=143)
Q810
Total Qualified
(n=143)
%
Rheumatoid
Arthritis
(n=108)
%
Scleroderma
(n=35)
%
Did not change anything
39
33
57
Started another medication or
supplements/vitamins in addition to antibiotics
34
38
23
Adjusted antibiotic treatment in some way
(net)*
28
32
18
Adjusted antibiotic dose
27
28
23
Changed the time when I took my antibiotic
17
20
6
Switched to a different antibiotic
13
14
9
Changed treatment in some other way
10
12
6
*Numbers in the box are not additive due to respondent ability to
select more than one response.
SMALL BASE for scleroderma:
Interpret results with CAUTION
65
Some common side effects persist over
time, while others abate.
Do these side effects continue to be a problem for you?
Respondents are rheumatic sufferers who have experienced specific side effects (n=varies per side effect)
Yes
%
No
%
Skin discoloration (n=63)
63
37
Increased sun sensitivity or sun burn (n=52)
52
48
Yeast Infection (n=52)
33
67
Dizziness (n=57)
19
81
Nausea (n=44)
14
86
Types of Side Effects
Q815
SMALL BASES: Interpret results with
CAUTION
66
Despite side effects, qualified respondent continue to
take antibiotics because the benefits of the treatment
outweigh the side effects.
For what reasons do you continue to take antibiotics?
Respondents are rheumatic sufferers whose side effects from antibiotics continue to be a problem
Q820
Total Qualified
(n=76)
%
Rheumatoid
Arthritis
(n=57)
%
Scleroderma
(n=19)
%
Benefits of the treatment outweigh the side
effects
76
79
68
I don’t want to try other treatments that may
have worse side effects
64
70
47
Side effects are acceptable
54
61
32
Side effects of other treatments I have tried are
worse side effects
34
42
11
My doctor wants me to stay on the antibiotics
9
9
11
Other
12
12
11
SMALL BASES: Interpret results with
CAUTION
67
Comparing Traditional Medication and Antibiotics
68
For the vast majority of qualified respondents, antibiotic
treatment has improved many aspects of their condition.
How much has the antibiotic treatment help in the following areas?
Respondents are all qualified respondents (n=198)
A Lot
%
Quite a
bit
%
Somewhat
%
Not at all
%
Does
not
Apply
%
Improving my quality of life
58
22
14
5
2
Slowing down or halting the progression
of my disease
53
19
19
7
3
Increasing my ability to function at home
51
24
18
5
3
Reducing pain
50
24
17
6
4
Reducing stiffness
49
21
22
6
3
Reducing swelling
46
26
18
7
4
Improving my mood
42
31
13
6
9
Reducing fatigue
41
27
24
5
4
Improving my ability to concentrate
and/or remember things
29
21
25
8
17
Q725&Q900
69
Qualified respondents who took traditional medication saw
minimal changes in their conditions.
How much has the antibiotic treatment help in the following areas?
Respondents are respondents who took traditional medication (n=180)
A Lot
%
Quite a
bit
%
Somewhat
%
Not at all
%
Does
not
Apply
%
Reducing pain
11
14
40
23
12
Reducing stiffness
9
10
38
28
14
Improving my quality of life
8
11
35
33
13
Reducing swelling
7
11
39
28
14
Increasing my ability to function at home
6
14
37
30
13
Slowing down or halting the progression of
my disease
5
6
28
45
16
Improving my mood
3
7
23
48
19
Reducing fatigue
3
6
28
47
15
Improving my ability to concentrate and/or
remember things
2
4
23
44
Q725&Q900
27
70
Qualified respondents who have taken both types of
treatment see more benefits with antibiotic treatment than
traditional prescribed medication treatment.
How much has the antibiotic/traditional treatment help in the following areas?
Respondents are rheumatic sufferers who ever took both antibiotics and traditional medications (n=180)
Antibiotic Treatment
% Somewhat/Quite a bit/A lot
Traditional Prescribed
Medication
% Somewhat/Quite a bit/A lot
Improved the quality of life
94
54
Increased the ability to function at
home
94
57
Reduced fatigue
93
38
Reduced stiffness
92
58
Slowed down the progression of my
condition
92
39
Reduced pain
91
64
Reduced swelling
89
58
Improving mood
85
33
Improved my ability to concentrate
and/or remember things
75
29
Q725&Q900
71
Among those who have taken both, 4 out of 5 found
antibiotics more tolerable to take than traditional
prescribed medication.
Which have you found more tolerable to take, traditional prescribed medication or antibiotics?
Respondents are rheumatic sufferers who have taken both traditional medications and antibiotics (n=180)
2%
7%
Traditional prescribed
medication
Antibiotics
13%
78%
Q905
Both are equally
tolerable
Not sure
72
Likelihood to Recommend Antibiotic Treatment
73
About 4 out of 5 qualified respondents are extremely
likely to recommend antibiotics to others with similar
rheumatic conditions.
How likely would you be to recommend antibiotic treatment to others with a condition like yours ?
Respondents are all qualified respondents (n=198)
Total Qualified
(n=198)
Rheumatoid Arthritis
(n=149)
Scleroderma (n=49)
86%
78% 76%
12% 13%
8%
Extremely Likely
7%
Very Likely
Likely
Total Qualified
(n=198)
Very/Extremely Likely (Net)
Q1000
6%
4%
5%
0%
0%
Somewhat Likely
Not at all Likely
Rheumatoid Arthritis Scleroderma
(n=149)
(n=49)
90%
89%
94%
SMALL BASE for Scleroderma: Interpret results with
CAUTION
74
Insurance Status
75
The majority of qualified respondents have some form
of health insurance.
Which of the following best describes you health insurance coverage?
Respondents are all qualified respondents (n=198)
85% of the sample has some
form of insurance coverage
4%
47%
11%
Health Insurance
through spouse or my
employer
Health Insurance
purchased directly
Health Insurance from
government programs
No Health Insurance
22%
16%
Q1100
Not sure
76
3 out of 5 have prescription coverage that includes both
brand name and generic.
Does your health insurance include prescription drug benefits?
Qualified respondents (n=198)
Yes, both generic and
brand name
3%
Yes, but generic only
11%
59%
1%
No, prescription drug
coverage not included
Not Sure if prescription
drugs were covered by
insurance
No health insurance
13%
13%
Not sure if they have
health insurance
Q1105
77
For the majority of qualified respondents
insurance covers their use of antibiotics.
Does your prescription drug benefit cover our use of antibiotics?
Qualified respondents (n=198)
Yes
11%
No
15%
1%
69%
Not Sure if antibiotics is
covered by insurance
Prescription drugs not
covered by insurance
No health insurance
4%
Q1110
78
Respondent Profile
79
Respondent Profile
Total Number of Respondents with Rheumatic
Conditions = 452
Gender
Male
Female
Countries
Age
18-29
30-49
50-64
65 and over
MEAN
%
20
80
%
3
35
52
11
52
Canada
United Kingdom
United States
Other
%
5
3
73
18
80