Int Urogynecol J (2013) 24:977–982 DOI 10.1007/s00192-012-1966-x
ORIGINAL ARTICLE
Interstitial cystitis patients’ use and rating of complementary and alternative medicine therapies Peter Gregory O’Hare III & Amy Rejba Hoffmann & Penny Allen & Barbara Gordon & Linda Salin & Kristene Whitmore Received: 22 July 2012 / Accepted: 3 October 2012 / Published online: 14 November 2012 # The International Urogynecological Association 2012
Abstract Introduction and hypothesis The purpose of this study was to describe the use of complementary and alternative medicine (CAM) therapies among interstitial cystitis (IC) patients, patients’ perception of CAM therapies’ effectiveness, and the association of time since diagnosis with perceived effectiveness of these therapies. Methods In April 2009, the Interstitial Cystitis Association (ICA) initiated an Internet-based survey on CAM. Respondents indicated whether they received an IC diagnosis and how long ago, whether they tried CAM, and who recommended it. On a 5-point scale, respondents rated 49 therapies. For respondents confirming a diagnosis, we used a chisquare goodness-of-fit test to assess which therapies were rated positively or negatively by a majority of patients who tried them. Using separate one-way analyses of variance, we assessed differences in mean perceived effectiveness among groups based on time since diagnosis and conducted post hoc tests, if necessary. Using chi-square tests, we explored the association of time since diagnosis with the use of CAM and the number of therapies tried. Results A total of 2,101 subjects responded to the survey; 1,982 confirmed an IC diagnosis. Most (84.2 %) had tried CAM, and 55 % said physicians had recommended CAM. Of those trying CAM, 82.8 % had tried diet or physical P. G. O’Hare III (*) : K. Whitmore Female Pelvic Medicine and Reconstructive Surgery, Drexel University College of Medicine, 207 N. Broad Street, 4th Floor, Philadelphia, PA 19107, USA e-mail:
[email protected] P. Allen : B. Gordon : L. Salin Interstitial Cystitis Association, Rockville, MD, USA A. R. Hoffmann Pelvic and Sexual Health Institute, Philadelphia, PA, USA
therapy and 69.2 % other therapies. Of the therapies, 22 were rated positively and 20 negatively; 7 were inconclusive. Therapies patients perceived to be helpful included dietary management and pain management adjuncts such as physical therapy, heat and cold, meditation and relaxation, acupuncture, stress reduction, exercise, and sleep hygiene. Many therapies worked better for those diagnosed recently than for those diagnosed long before. Conclusions Randomized, placebo-controlled studies are needed to demonstrate which therapies may indeed control IC symptoms and help send research in new and productive directions. Keywords Interstitial cystitis . Complementary therapies . Diet therapy . Physical therapy modalities
Abbreviations and acronyms ANOVA Analysis of variance CAM Complementary and alternative medicine IC Interstitial cystitis ICA Interstitial Cystitis Association NIDDK National Institute of Diabetes and Digestive and Kidney Diseases
Introduction Interstitial cystitis (IC), currently referred to as IC/bladder pain syndrome (BPS), is a bladder disease complex that the Society for Urodynamics and Female Urology (SUFU) defines as: “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes” [1].
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With few effective treatments available for IC [2], patients are often willing to try treatments that traditional medicine does not offer. Their interest in complementary and alternative medicine (CAM) therapies, especially diet, has been apparent since the earliest support group meetings [3]. That interest has been growing, reflected in the increased use of CAM among Americans [4]. Dietary modification to control symptoms became popular among IC patients soon after the Interstitial Cystitis Association (ICA) was founded more than 25 years ago. In 2007 [5], a study helped confirm that some comestibles, food and beverage items, affect symptoms and corroborated the items patients most often identified as problematic. Now, dietary modification has become standard IC therapy and has been incorporated into the American Urological Association (AUA) clinical guidelines. It is incorporated in the first line of the treatment algorithm, stating: “avoidance of certain foods known to be common bladder irritants for IC/BPS patients such as coffee or citrus products and use of an elimination diet to determine which foods or fluids may contribute to symptoms” [6]. Myofascial physical therapy in IC patients was also once considered a complementary therapy lacking research foundation. Nevertheless, its popularity grew among patients and clinicians. Now, pelvic floor dysfunction is recognized as a significant contributor to IC patients’ pain and a National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) funded, Interstitial Cystitis Collaborative Research Network trial of the therapy has demonstrated its value for women with IC [7]. With its inclusion in the AUA clinical guidelines, myofascial physical therapy has also become accepted. This history implies that patients’ perception of a therapy’s effectiveness could increase researchers’ odds of positive results when they look for CAM therapies to study or for related drugs and devices to develop. IC patients’ high and growing interest in CAM led the ICA to conduct an Internet-based survey. With the survey and its analysis, the ICA and the Pelvic and Sexual Health Institute aimed to find out what CAM therapies patients were using, which they perceived to be effective, the extent to which clinicians were recommending CAM, which patients may benefit, and which therapies might hold promise for research.
Materials and methods On 7 April 2009, the ICA posted the survey on the Internet survey site SurveyMonkey.com and notified patients of its availability through the association’s e-mail list and on its website at www.ichelp.org. Reminders about the survey were included in the April and May electronic newsletters, also sent to the e-mail list. The final responses were
Int Urogynecol J (2013) 24:977–982
collected on 5 June 2009. No Institutional Review Board (IRB) approval was necessary due to the survey being anonymously collected. Information collected included whether respondents had received an IC diagnosis, how long ago they had received the diagnosis, whether they had tried CAM therapies and how many, and who had recommended these therapies to them. Because diet and physical therapy were on their way to being considered more standard than CAM at the time of the survey, we asked in a separate question whether patients had tried either of these therapies and CAM therapies other than these. The survey included questions on 49 specific CAM therapies the ICA knew to be used by patients through comments and questions submitted to the ICA and through Internet searches. The therapies were grouped for convenience in the following categories: dietary approaches, acupuncture, movement therapies, mind-body techniques, physical manipulation, herbal supplements, nutritional supplements, lifestyle changes, and “other.” Open-ended questions allowed respondents to note additional therapies they found helpful. The ICA staff tested the survey for readability and comprehension. Respondents rated their perceived effectiveness of each therapy in controlling their IC symptoms on a 5-point scale: completely controlled, pretty well controlled, somewhat controlled, not at all, or made symptoms worse. Descriptive statistics were reported for time since IC diagnosis, number of therapies tried, and the type of provider that recommended the therapies. Chi-square analyses were conducted to assess which therapies were rated positively (at least somewhat helpful) or negatively (symptoms stayed the same or were worse) by a significant majority of patients that tried them. Separate one-way analyses of variance (ANOVAs) were conducted to determine differences in mean responses for perception of effectiveness of therapies among groups based on time since diagnosis. Post hoc analyses were conducted using a Bonferroni correction, if necessary. Chi-square tests were also used to explore differences in distribution of responses among groups based on time since diagnosis for whether they had tried complementary therapy and the number of therapies tried. Data were analyzed using SPSS (Version 18, SPSS Inc., Chicago, IL, USA). Level of significance for all tests was set at α≤.05.
Results A total of 2,101 subjects responded to the survey; 1,982 confirmed receiving a diagnosis of IC and were included in this analysis. No further demographic data were collected.
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Of the 1,828 patients answering the question how many CAM therapies they had tried, 84.2 % reported trying at least one, 45.6 % had tried 1 or 2, 24.8 % had tried 3 or 4, 13.8 % had tried 5, and 15.8 % had tried none; 82.8 % had tried diet or physical therapy, and 69.2 % had tried CAM therapies other than diet and physical therapy. Many different types of providers had recommended CAM therapies, but more than half the patients (55 %) said that a physician had recommended CAM therapy, and 62.5 % had discussed a therapy’s safety or effectiveness with their doctor, nurse, or pharmacist. The second most common source for recommendations was a website (30.9 %). Other sources of CAM information were an IC support group member or a friend with IC (18.3 %), physical therapist (11.7 %), acupuncturist (10.8 %), nurse (9.7 %), chiropractor (6.6 %), herbalist (5.9 %), massage therapist (5.4 %), nutritionist or dietitian (5.4 %), and someone in a natural food store (5.4 %). Results were significant for 22 therapies that were rated positively (Table 1) and 20 that were rated negatively (Table 2). For seven therapies, results were inconclusive (Table 3).
Table 2 Therapies rated as not helpful Therapy (n)
Patients not improved, n (%), p
