Experiences with Antibiotics and Other Treatments for Rheumatic Diseases: Patient Survey

1. Prepared for: Road Back Foundation November 11, 2005 J25304 Experiences with Antibiotics and Other Treatments for Rheumatic Diseases: Patient Survey

2. 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

3. 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, 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 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 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 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 Respondents

9. Limitations of the Study

10. 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.

11. Key Findings

12. Key Findings • 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 • 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. Key Findings • 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 • 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. Key Findings • 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 • 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. 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.  

16. Initial Conclusions and Recommendations

17. 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.

18. Detailed Findings

19. Profile of Respondents with Rheumatic Conditions

20. 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) Q300 *Other Rheumatic Diseases include: Sjogren’s Syndrome, Raynaud’s, Fibromyalgia **Other Diseases include: Obesity, Leukemia, Infertility

21. 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) Q325

22. 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) 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

23. 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) Rheumatic Condition Rheumatoid Arthritis Scleroderma (n=452) (n=273) (n=88) Severe (Net) 37% 37% 30% Mild/No Symptoms (Net) 35% 34% 41% Q320

24. 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) Q330

25. 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) Q330

26. Antibiotic Use Among Respondents with Rheumatic Conditions

27. 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 Q335

28. 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% Q345

29. 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) Q350

30. 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) Q340

31. 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 Q355

32. 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) SMALL BASE: Interpret results with CAUTION Q360

33. Use of Other Medications and Treatments by Qualified Respondents

34. 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 SMALL BASE for Scleroderma: Interpret results with CAUTION Q400 & 405

35. 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) SMALL BASE with Scleroderma: Interpret results with CAUTION *Note: Exact wording of response set is as follows: Complementary prescription medication (ex. ACE inhibitor, anti-reflux, calcium channel blocker Q410

36. Profile of Antibiotic Use for Qualified Respondents

37. 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) Q620

38. 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) 56% SMALL BASE for Scleroderma: Interpret results with CAUTION Q600

39. 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) SMALL BASE for Scleroderma: Interpret results with CAUTION Q500

40. 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) SMALL BASE for Scleroderma: Interpret results with CAUTION Q505

41. 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) SMALL BASE for Scleroderma: Interpret results with CAUTION Q510

42. 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) Q615

43. Access to Physicians to Initiate Treatment with Antibiotics

44. 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) SMALL BASE for Scleroderma: Interpret results with CAUTION Total Qualified Rheumatoid Arthritis Scleroderma (n=198) (n=149) (n=49) Difficult (Net) 51% 50% 53% Easy (Net) 25% 24% 27% Q625

45. 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) 80% SMALL BASE with Scleroderma: Interpret results with CAUTION Q630

46. 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) Q635

47. Initial Effects of Antibiotic Use

48. 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) Q710

49. 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) Q415

50. Effects of Antibiotic Treatment