prepared for: road back foundation november 11, 2005 j25304 experiences with antibiotics and other...

Prepared for:

Road Back FoundationRoad Back Foundation

November 11, 2005

J25304

Experiences with Antibiotics and Experiences with Antibiotics and Other Treatments for Rheumatic Other Treatments for Rheumatic

Diseases: Diseases: Patient SurveyPatient Survey

2

Table of ContentsTable 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

3

Background 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)

4

Background, continuedBackground, 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.

5

Project ObjectivesProject 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.

6

Research ObjectivesResearch 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.

7

Sample and MethodologySample 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”.

*An additional 47 respondents logged onto the survey but did not have rheumatic conditions.

8

Breakdown of RespondentsBreakdown of Respondents

N %

Respondents with Rheumatic Conditions 452 100

Qualified Respondents 198 44

With Rheumatoid Arthritis 149 33

With Scleroderma 49 11

9

Limitations of the StudyLimitations of the Study

10

LimitationsLimitations

• 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.

11

Key FindingsKey Findings

12


1. The Internet has played an important role in learning about and initiating antibiotic treatment for qualified respondents.

– 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

2. 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

13


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

14


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.

15


• 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.

16

Initial Conclusions and RecommendationsInitial Conclusions and Recommendations

17

Initial Conclusions and Initial Conclusions and RecommendationsRecommendations

• 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.

18

Detailed FindingsDetailed Findings

19

Profile of Respondents with Rheumatic ConditionsProfile of Respondents with Rheumatic Conditions

20

The majority of respondents have been diagnosed with The majority of respondents have been diagnosed with rheumatoid arthritis.rheumatoid arthritis.

Respondents with Rheumatic Conditions (n=452)

% Yes

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

Q300

Has a doctor ever diagnosed you with any of the following conditions?

Respondents are all respondents with rheumatic conditions (n=452)

*Other Rheumatic Diseases include: Sjogren’s Syndrome, Raynaud’s, Fibromyalgia

**Other Diseases include: Obesity, Leukemia, Infertility

21

Most respondents primarily see a rheumatologist for Most respondents primarily see a rheumatologist for their condition.their condition.

58%

27%

4%

2%

6%

3%

Rheumatologist

Primary Care Doctor

Naturopathic Physician

Osteopathic Physician

Another Kind ofPhysicianDo Not See a Physician

Q325

What kind of physician do you primarily see for your rheumatic condition?


22

About 1 in 4 respondents have been diagnosed About 1 in 4 respondents have been diagnosed for more than 10 years.for more than 10 years.

11%

20% 23% 22%

9%

13%

Less than 1 year 1-2 years 3-5 years 6-10 years 11-15 years More than 15

Rheumatic Condition 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%Q315

How long ago were you diagnosed with your rheumatic conditions?


23

For more than one third of respondents, their For more than one third of respondents, their condition is very or somewhat severe.condition is very or somewhat severe.

11%

25%28% 28%

7%

Very Severe Somewhat Severe Moderate Mild No Symptoms ordifficulty

Rheumatic Condition Rheumatoid Arthritis Scleroderma

(n=452) (n=273) (n=88)

Severe (Net) 37% 37% 30%

Mild/No Symptoms (Net) 35% 34% 41%Q320

Please rate the current severity of your rheumatic condition?

Respondents are All respondents with rheumatic conditions (n=452)

24

1 in 5 of respondents feels their doctor is not at all 1 in 5 of respondents feels their doctor is not at all knowledgeable about antibiotic use to treat their knowledgeable about antibiotic use to treat their conditions.conditions.

15%11%

12%

30%

20%

12%

ExtremelyKnowledgeableVery Knowledgeable

Knowledgeable

SomewhatKnowledgeableNot at all Knowledgeable

Not sure

Q330

How would you rate your doctor’s knowledge about antibiotic treatment for your rheumatic condition?

Base: Respondents with rheumatic conditions with doctors (n=438)

25

Even among qualified respondents, 1 in 5 believes their doctor Even among qualified respondents, 1 in 5 believes their doctor is not at all knowledgeable about antibiotic use to treat their is not at all knowledgeable about antibiotic use to treat their conditions. conditions.

20%

12%

13%

32%

20%

3%ExtremelyKnowledgeableVery Knowledgeable

Knowledgeable

SomewhatKnowledgeableNot at all Knowledgeable

Not sure

Q330

How would you rate your doctor’s knowledge about antibiotic treatment for your rheumatic condition?

Base: Qualified respondents who see a doctor (n=197)

However, qualified respondents are more likely to rate their doctor as extremely knowledgeable than are all respondents:

26

Antibiotic Use Among Respondents Antibiotic Use Among Respondents with Rheumatic Conditionswith Rheumatic Conditions

27

The majority of the respondents have taken antibiotics to The majority of the respondents have taken antibiotics to treat their condition. 3 out of 5 are currently doing so.treat their condition. 3 out of 5 are currently doing so.

16%

56%

28% Yes, but NOT currentlyYes, currently takingNo

Q335

71% have ever taken antibiotics to treat their rheumatic condition

Have you ever taken or are you currently taking antibiotics to treat your rheumatic condition?


28

Most respondents currently taking antibiotics have been Most respondents currently taking antibiotics have been taking them for a year or longer.taking them for a year or longer.

1% 4%

17% 15%

28%

16%18%

< a week 1 week to <1 month

1 month to< 6 months

6 months to< 1 year

1 year to < 3years

3 years to <5 years

5 years ormore

Respondents are those currently taking antibiotics (n=251)

Q345

How long have you been taking antibiotics to treat your rheumatic condition?

37%63%

29

Reasons why people with rheumatic conditions take Reasons why people with rheumatic conditions take antibiotics:antibiotics:

Rheumatic sufferers who ever took antibiotics (n=289)

%

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

Q350

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)

30

Among those respondents who NEVER took antibiotics, Among those respondents who NEVER took antibiotics, only 13% indicated that their physician had ever only 13% indicated that their physician had ever mentioned this treatment to them.mentioned this treatment to them.

13%

85%

2%

YesNoNot Seeing a Doctor

Respondents are rheumatic sufferers who have never taken antibiotics (n=127)

Q340

Has your doctor ever mentioned treating your rheumatic condition with antibiotics?

31

Most respondents who stopped taking antibiotics were Most respondents who stopped taking antibiotics were on this regimen for a year or more before they stopped.on this regimen for a year or more before they stopped.

0%6%

22% 19%

32%

11% 8%

< a week 1 week to< 1 month

1 month to< 6 months

6 monthsto < 1 year

1 year to <3 years

3 years to< 5 years

5 years ormore

Respondents are rheumatic sufferers who have taken antibiotics but NOT currently (n=72)

SMALL BASE: Interpret results with CAUTION

Q355

51%

How long were you taking antibiotics to treat your rheumatic condition before you stopped?

32

Reasons why people with rheumatic conditions stopped Reasons why people with rheumatic conditions stopped taking antibiotics:taking antibiotics:

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

Q360

SMALL BASE: Interpret results with CAUTION

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)

33

Use of Other Medications and Treatments by Use of Other Medications and Treatments by Qualified RespondentsQualified Respondents

34

Besides antibiotics, most qualified respondents have Besides antibiotics, most qualified respondents have taken other medications for their rheumatic condition.taken other medications for their rheumatic condition.

Name of Medication

Total Qualified (n=198)

%

Rheumatoid Arthritis (n =149)

%

Scleroderma (n =49)

%


%

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

EVER TOOK CURRENTLY TAKING

SMALL BASE for Scleroderma: Interpret results with CAUTIONQ400 & 405

What other types of medications you have taken to treat your rheumatic condition?

Qualified respondents who have taken medications

35

Qualified respondents are also trying other types of Qualified respondents are also trying other types of treatments/therapies for their rheumatic conditions.treatments/therapies for their rheumatic conditions.

Types of complementary therapiesTotal 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 CAUTIONQ410

What kinds of complementary therapies do you use, if any?

Respondents are all qualified respondents (n=198)

*Note: Exact wording of response set is as follows: Complementary prescription medication (ex. ACE inhibitor, anti-reflux, calcium channel blocker

36

Profile of Antibiotic Use for Qualified RespondentsProfile of Antibiotic Use for Qualified Respondents

37

For qualified respondents, rheumatologists tend to For qualified respondents, rheumatologists tend to start the antibiotic regimen.start the antibiotic regimen.

45%

31%

7%

6%

2%

9% Rheumatologist

Primary Care Doctor

Naturopathic Physician

Osteopathic Physician

Another Kind ofHealthcare ProfessionalAnother Kind ofPhysician


Q620

What type of doctor started you on antibiotics?

38

More than half started treatment 2 years or less after More than half started treatment 2 years or less after their diagnosis.their diagnosis.

31% 29%

39%

25%22%

33%

16% 17%

12%8% 8% 6% 8% 8% 6%

9% 11%

2%

Less than 1 year 1-2 years 3-5 years 6-10 years 11-15 years More than 15

Total Qualified(n=198)

RheumatoidArthritis (n=149)

Scleroderma(n=49)

SMALL BASE for Scleroderma: Interpret results with CAUTION

Q600

How long have you had rheumatic condition before you started treatment with antibiotics?


56%

39

3 out of 5 qualified respondents use the brand name of 3 out of 5 qualified respondents use the brand name of their antibiotic medication.their antibiotic medication.

36%41%

22%

61% 56%

76%

3% 3% 2%

Generic Brand Name Not Sure


RheumtoidArthritis (n=149)

Scleroderma(n=49)



Q500

Do you currently take a generic or brand name antibiotic to treat your rheumatic condition?

40

The majority of the qualified respondents use The majority of the qualified respondents use Minocycline.Minocycline.

82%83% 82%

11%13%

6%9%

7%

14%

2% 1% 4%

11%12%8%

Minocycline Doxycycline Clindamycin Tetracycline Other antibiotic



Scleroderma(n=49)



Q505

Which of the following antibiotics are you currently taking to treat your rheumatic condition?

41

Over half of the qualified respondents say their doctor Over half of the qualified respondents say their doctor has modified their antibiotic treatment to fine tune its has modified their antibiotic treatment to fine tune its effectiveness.effectiveness.

58% 58% 57%

41% 41% 43%

1% 1% 0%

Yes No Not Sure



Scleroderma(n=49)


SMALL BASE for Scleroderma: Interpret results with CAUTIONQ510

Have your doctor and you changed your antibiotic medication or adjusted the dosage to fine tune your treatment?

42

An overwhelming majority of the qualified respondents (94%) did An overwhelming majority of the qualified respondents (94%) did not learn about the use of antibiotics from healthcare not learn about the use of antibiotics from healthcare professionals and the internet educated almost half of them professionals and the internet educated almost half of them (47%) about this treatment.(47%) about this treatment.

6%

5%

10%

47%

29%

3%

HealthcareProfessional

Another Patient

A friend

Internet

Books/Articles

Other

Q615

How did you first learn about the use of antibiotics to treat rheumatic condition?

Respondents were all qualified respondents (n=198)

43

Access to Physicians to Initiate Treatment with Access to Physicians to Initiate Treatment with AntibioticsAntibiotics

44

Half of qualified respondents had difficulty finding a Half of qualified respondents had difficulty finding a doctor that would treat their condition with antibiotics.doctor that would treat their condition with antibiotics.

23%25%

16%

28% 26%

37%

24%26%

20% 18%17%20%

7% 7% 6%

TotalQualified(n=198)RheumatoidArthritis(n=149)Scleroderma(n=49)

Total Qualified Rheumatoid Arthritis Scleroderma

(n=198) (n=149) (n=49)

Difficult (Net) 51% 50% 53%

Easy (Net) 25% 24% 27%


Q625

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)

45

Many qualified respondents (80%) had to educate their Many qualified respondents (80%) had to educate their doctors or search for another one, in order to find a doctors or search for another one, in order to find a physician to treat them with antibiotics.physician to treat them with antibiotics.


%


%

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

SMALL BASE with Scleroderma: Interpret results with CAUTION


Q630

How did you find a doctor who would treat you with antibiotics?

80%

46

Almost 2 out of 5 qualified respondents had to travel a Almost 2 out of 5 qualified respondents had to travel a considerable distance to find a doctor that would treat considerable distance to find a doctor that would treat them with antibiotics.them with antibiotics.

38%

62%

YesNo


Q635

Did you have to travel a considerable distance to find a doctor who would treat your rheumatic condition with antibiotics?

47

Initial Effects of Antibiotic UseInitial Effects of Antibiotic Use

48

About half of qualified respondents experienced About half of qualified respondents experienced worsening of symptoms after starting antibiotic worsening of symptoms after starting antibiotic regimen. regimen.

47%

42%

11%

YesNoNot Sure


Q710

Did your symptoms worsen at the start of antibiotic treatment?

49

Over two thirds (67%) found that they took less Over two thirds (67%) found that they took less medication overall or stopped taking other medication overall or stopped taking other medications completely. medications completely.

Respondents are all qualified respondents (n=varies per medication taken)

Q415

Type of MedicationTaking 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

Since you started taking antibiotics, has there been any change in the frequency with which you take the following?

50

Effects of Antibiotic TreatmentEffects of Antibiotic Treatment

51

9 out of 10 qualified respondents experienced positive 9 out of 10 qualified respondents experienced positive changes or improvements after starting antibiotics.changes or improvements after starting antibiotics.

89%

3%

8%

YesNoToo Soon to Tell


Q700

Have you experienced any positive changes or improvements in your disease after starting antibiotic treatment?

52

Almost half of qualified respondents saw improvements Almost half of qualified respondents saw improvements in their condition within 3 months of use of antibiotics.in their condition within 3 months of use of antibiotics.

3%8%

19%29%

21%

10%6% 5%

Saw NoImprovements

Too Soon totell

Within a Month Within 3Months

Within 6Months

Within 1 year Within 2 years 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)

How long were you taking antibiotics before you began to notice positive changes or improvements with your disease?

47%

53


43%

4%

36%

13% 15%

26%

4%

37%

2%

20%

Very Severe SomewhatSevere

Moderate Mild None

Level ofpain/discomfortBEFORE takingantibiotics

Level ofpain/discomfortAFTER takingantibiotics

Before antibiotic treatment, 79% of qualified Before antibiotic treatment, 79% of qualified respondents reported severe levels of pain, compared to respondents reported severe levels of pain, compared to only 17% after antibiotic use. only 17% after antibiotic use.

Q715

Please indicate the level of pain or discomfort from you rheumatic condition BEFORE and AFTER antibiotic treatment.

Very Severe/Somewhat Severe (net) of pain before antibiotics: 79%

Very Severe/Somewhat Severe (net) of pain after antibiotics: 17%

54

Respondents are qualified respondents with rheumatoid arthritis (n=149)

Levels of pain/discomfort BEFORE and AFTER Levels of pain/discomfort BEFORE and AFTER antibiotic treatment for qualified respondents antibiotic treatment for qualified respondents with rheumatoid arthritis and with scleroderma.with rheumatoid arthritis and with scleroderma.

35%

4%

43%

14%12%

22%

4%

35%

6%

24%

Very Severe Somewhat Severe Moderate Mild None

Q715


Respondents are qualified respondents with scleroderma (n=49)


Legend:

Level of pain/discomfort BEFORE antibiotics

Level of pain/discomfort AFTER antibiotics

43%

4%

36%

13% 15%

26%

4%

37%

2%

20%

Very Severe Somewhat Severe Moderate Mild None

55


82%

15%

3%

Pain Decreased

Pain Stayed theSame

Pain Increased

4 out of 5 qualified respondents saw a decrease in 4 out of 5 qualified respondents saw a decrease in pain/discomfort after taking antibiotics.pain/discomfort after taking antibiotics.

Q715


Pain Decrease Pain Stayed Same Pain Increased

Rheumatoid Arthritis (n=149) 85% 11% 3%

Scleroderma (n=49) 73% 24% 2%

56


43%

12%

34%

20% 17%

26%

6%

32%

1%

10%


Moderate Mild None

Severity BEFOREtaking antibiotics

Severity AFTERtaking antibiotics

Severity ratings dropped from 77% before Severity ratings dropped from 77% before antibiotics use to 32% after antibiotic use. antibiotics use to 32% after antibiotic use.

Q320&Q605

Please rate the severity of your rheumatic condition BEFORE and AFTER antibiotic treatment.

Very Severe/Somewhat Severe (net) before antibiotics: 77%

Very Severe/Somewhat Severe (net) after antibiotics: 32%

57

Respondents are qualified respondents with rheumatoid arthritis (n=149)

Severity BEFORE and AFTER antibiotic treatment Severity BEFORE and AFTER antibiotic treatment for qualified respondents with rheumatoid for qualified respondents with rheumatoid arthritis and with scleroderma.arthritis and with scleroderma.

44%

13%

34%

20%17%

25%

5%

34%

0%

9%


Moderate Mild None

Q320&Q605

Please rate the severity of your rheumatic condition BEFORE and AFTER antibiotic treatment.

39%

10%

35%

20%18%

29%

6%

27%

2%

14%


Moderate Mild None

Respondents are qualified respondents with scleroderma (n=49)


Legend:

Level of Severity BEFORE antibiotics

Level of Severity AFTER antibiotics

58

Two thirds of qualified respondents saw the severity of Two thirds of qualified respondents saw the severity of their condition decrease after taking antibiotics while a their condition decrease after taking antibiotics while a

third saw no change.third saw no change.

65%2%

33% DecreasedSeverityIncreasedSeverityNo Change

Q320&Q605

Severity of Condition Before and After Antibiotics


Severity Decrease No Change Severity Increased


Scleroderma (n=49) 55% 43% 2%

59


48%

4%

34%

14% 14%

34%

3%

28%

1%

20%

Very Difficult Difficult Neither Difficultnor Easy

Easy Very easy

BEFOREtakingantibiotics

AFTER takingantibiotics

Level of difficulty/ease for maintaining usual or daily routines Level of difficulty/ease for maintaining usual or daily routines and activities BEFORE and AFTER antibiotic treatment for and activities BEFORE and AFTER antibiotic treatment for qualified respondents with rheumatic conditions.qualified respondents with rheumatic conditions.

Q610&Q720

How easy or difficult was it for you to maintain your usual daily routines and activities BEFORE and AFTER antibiotic treatment?

60

Respondents are all qualified respondents with rheumatoid arthritis (n=149)

50%

3%

32%

13%15%

36%

3%

28%

0%

19%

Very Difficult Difficult Neither Difficult norEasy

Easy Very Easy

Q610& Q720

Level of difficulty/ease for maintaining usual or daily routines and Level of difficulty/ease for maintaining usual or daily routines and activities BEFORE and AFTER antibiotic treatment for qualified activities BEFORE and AFTER antibiotic treatment for qualified respondents with rheumatoid arthritis and with scleroderma.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?

43%

6%

39%

14% 12%

31%

2%

27%

4%

22%

Very Difficult Difficult Neither Difficult norEasy

Easy Very Easy

Respondents are all qualified respondents with scleroderma (n=49)


Legend:

Level of difficulty/ease in maintaining usual or daily routines and activities BEFORE antibiotics

Level of difficulty/ears in maintaining usual or daily routines and activities AFTER antibiotics

61

The majority of the qualified respondents (80%) found it The majority of the qualified respondents (80%) found it easier to manage their daily routines after starting easier to manage their daily routines after starting antibiotic treatment. antibiotic treatment.

2%18%

80%

More DifficultEasierNo Change

Q610&720

Difficulty in managing daily routines before and after antibiotics


Easier No Change More Difficult


Scleroderma (n=49) 71% 29% -

Found managing daily routines more:

62

Side Effects from Antibiotic TreatmentSide Effects from Antibiotic Treatment

63

Almost 7 out of 10 qualified respondents have Almost 7 out of 10 qualified respondents have experienced side effects due to their antibiotic use.experienced side effects due to their antibiotic use.


%


%

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

SMALL BASE with Scleroderma: Interpret results with CAUTION


Q800

Have you ever experienced any of the following side effects due to taking antibiotics to treat rheumatic condition?

64

Among those qualified respondents who experienced side Among those qualified respondents who experienced side effects, most were moderate or mild.effects, most were moderate or mild.

Respondents are rheumatic sufferers who have experienced specific side effects (n=varies per side effect)

SMALL BASES: Interpret results with CAUTION

28% DID NOT experience any side effects from antibiotics

Q805

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

How severe were these side effects due to taking antibiotics?

65

2 in 5 qualified respondents who had side effects did not change 2 in 5 qualified respondents who had side effects did not change anything to address these problems; 28% adjusted their antibiotic anything to address these problems; 28% adjusted their antibiotic treatment in some way; and 1 in 3 started another medication or treatment in some way; and 1 in 3 started another medication or supplement.supplement.


%


%

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

Q810

Respondents are rheumatic sufferers who have experienced specific side effects from antibiotics (n=143)

SMALL BASE for scleroderma: Interpret results with CAUTION

Which of the following, if any, have you done to address side effects of antibiotics?

*Numbers in the box are not additive due to respondent ability to select more than one response.

66

Some common side effects persist over Some common side effects persist over time, while others abate.time, while others abate.

Respondents are rheumatic sufferers who have experienced specific side effects (n=varies per side effect)


Q815

Types of Side EffectsYes%

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

Do these side effects continue to be a problem for you?

67

Despite side effects, qualified respondent continue to Despite side effects, qualified respondent continue to take antibiotics because the benefits of the treatment take antibiotics because the benefits of the treatment outweigh the side effects.outweigh the side effects.


%

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

Q820

Respondents are rheumatic sufferers whose side effects from antibiotics continue to be a problem


For what reasons do you continue to take antibiotics?

68

Comparing Traditional Medication and AntibioticsComparing Traditional Medication and Antibiotics

69

For the vast majority of qualified respondents, antibiotic For the vast majority of qualified respondents, antibiotic treatment has improved many aspects of their condition.treatment has improved many aspects of their condition.

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

How much has the antibiotic treatment help in the following areas?

70

Qualified respondents who took traditional medication saw Qualified respondents who took traditional medication saw minimal changes in their conditions.minimal changes in their conditions.

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 27

Respondents are respondents who took traditional medication (n=180)

Q725&Q900

How much has the antibiotic treatment help in the following areas?

71

Qualified respondents who have taken both types of Qualified respondents who have taken both types of treatment see more benefits with antibiotic treatment than treatment see more benefits with antibiotic treatment than traditional prescribed medication treatment.traditional prescribed medication treatment.

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

Respondents are rheumatic sufferers who ever took both antibiotics and traditional medications (n=180)

Q725&Q900

How much has the antibiotic/traditional treatment help in the following areas?

72

Among those who have taken both, 4 out of 5 found Among those who have taken both, 4 out of 5 found antibiotics more tolerable to take than traditional antibiotics more tolerable to take than traditional prescribed medication.prescribed medication.

2%

78%

13%

7%Traditional prescribedmedicationAntibiotics

Both are equallytolerableNot sure

Respondents are rheumatic sufferers who have taken both traditional medications and antibiotics (n=180)

Q905

Which have you found more tolerable to take, traditional prescribed medication or antibiotics?

73

Likelihood to Recommend Antibiotic TreatmentLikelihood to Recommend Antibiotic Treatment

74

About 4 out of 5 qualified respondents are extremely About 4 out of 5 qualified respondents are extremely likely to recommend antibiotics to others with similar likely to recommend antibiotics to others with similar rheumatic conditions.rheumatic conditions.

78% 76%86%

12% 13%8%

7 %

7% 6% 4% 5%0% 0%

Extremely Likely Very Likely Likely Somewhat Likely Not at all Likely

Total Qualified(n=198)Rheumatoid Arthritis(n=149)Scleroderma (n=49)

Total Qualified Rheumatoid Arthritis Scleroderma

(n=198) (n=149) (n=49)

Very/Extremely Likely (Net) 90% 89% 94%SMALL BASE for Scleroderma: Interpret results with CAUTION

Q1000

How likely would you be to recommend antibiotic treatment to others with a condition like yours?


75

Insurance StatusInsurance Status

76

The majority of qualified respondents have some form The majority of qualified respondents have some form of health insurance.of health insurance.

47%

16%

22%

11%

4%

Health Insurancethrough spouse or myemployerHealth Insurancepurchased directly

Health Insurance fromgovernment programs

No Health Insurance

Not sure


85% of the sample has some form of insurance coverage

Q1100

Which of the following best describes you health insurance coverage?

77

3 out of 5 have prescription coverage that includes both 3 out of 5 have prescription coverage that includes both brand name and generic.brand name and generic.

59%

13%

13%

1%

11%

3%

Yes, both generic andbrand name

Yes, but generic only

No, prescription drugcoverage not included

Not Sure if prescriptiondrugs were covered byinsuranceNo health insurance

Not sure if they havehealth insurance

Qualified respondents (n=198)

Q1105

Does your health insurance include prescription drug benefits?

78

For the majority of qualified respondents For the majority of qualified respondents insurance covers their use of antibiotics.insurance covers their use of antibiotics.

69%

4%

1%

15%

11% Yes

No

Not Sure if antibiotics iscovered by insurancePrescription drugs notcovered by insuranceNo health insurance

Qualified respondents (n=198)

Q1110

Does your prescription drug benefit cover our use of antibiotics?

79

Respondent ProfileRespondent Profile

80

Respondent ProfileRespondent Profile

Gender %

Male 20Female 80

Gender %

Male 20Female 80

Total Number of Respondents with Rheumatic Conditions = 452

Age%

18-29 330-49 3550-64 5265 and over 11MEAN 52

Age%

18-29 330-49 3550-64 5265 and over 11MEAN 52

Countries%

Canada 5United Kingdom 3United States 73Other 18

Countries%

Canada 5United Kingdom 3United States 73Other 18

prepared for: road back foundation november 11, 2005 j25304 experiences with antibiotics and other...

Documents

use of antibiotics

rheumatic conditions

profile of respondents

qualified respondents

antibiotic regimen

patient survey slide

rheumatoid disease

key findings