How do women with interstitial cystitis/bladder pain syndrome make treatment choices?

Abstract

Introduction and hypothesis There is a relative lack of data regarding how patients weigh various factors when choosing a treatment strategy for interstitial cystitis/bladder pain syndrome (IC/BPS). Our aim is to describe patient experience with their current and prior treatments and discuss factors they consider when choosing a treatment. Methods Twenty-one women with IC/BPS participated in five focus groups moderated by a psychologist. Focus groups were conducted until thematic saturation was reached. Group discussions were transcribed and independently coded by two reviewers. Emergent themes and concepts were identified using grounded theory methodology. Data on symptoms and beliefs regarding medications were collected using validated questionnaires: Interstitial Cystitis Symptom and Problem Index (ICSI and ICPI) and Beliefs in Medications Questionnaire-Specific (BMQ-S). Results The median age of participants was 42 years, and all had some college education. Median score (range) for the ICSI was 12 (4, 20) and for the ICPI was 10 (3, 16), indicating moderate symptom burden. Most patients had tried only first- or second-line treatments. The median BMQ-S score was 2, indicating a neutral attitude toward medication. Several themes were identified. Patients expressed interest in self-management of symptoms using a structured care plan that incorporates guided self-care practices and care that can be delivered virtually. Patients desired to minimize treatment side effects by reducing prescription medications and avoiding surgical procedures. Finally, patients had considerable interest in alternative treatments; however, they wanted these treatments to be evidence-based. Conclusions Women with IC/BPS have a strong interest in guided programs that teach self-care practices and deliver alternative treatments through remote platforms.

Centering Group Treatment for Women With Interstitial Cystitis/Bladder Pain Syndrome: A Qualitative Analysis

“…Both control and Centering patients noted that standard medicine has limitations in addressing ICBPS, notably difficulties in diagnosis, confusion of health care providers about the best way to treat, and difficulty accessing the right health care provider. Both groups of patients also noted that they are open to options that are self-efficacious, such as complementary and alternative medicine, meditation, and dietary changes, something that upholds prior work indicating that women with ICBPS want nontraditional treatments 6,9 and structured treatment regimens that involve self-care practices 24 . In addition, both Centering and non-Centering participants noted how much isolation and loneliness are felt in the experience of ICBPS 3,25 .…”

“…Women with ICBPS also reveal more when asked open-ended questions; recent qualitative work has illuminated that women with ICBPS want more of a self-directed treatment plan that avoids medication and surgery. 24 Because quantitative outcomes may miss this type of vital information, qualitative data collection should be central in considering therapies.…”

“…Qualitative work on pelvic floor diseases, such as fecal incontinence 20,21 and endometriosis, 22,23 have demonstrated that women with these sensitive issues have unexpressed emotions, motivations, and needs regarding their care. Women with ICBPS also reveal more when asked open-ended questions; recent qualitative work has illuminated that women with ICBPS want more of a self-directed treatment plan that avoids medication and surgery 24 . Because quantitative outcomes may miss this type of vital information, qualitative data collection should be central in considering therapies.…”

“…Both groups of patients also noted that they are open to options that are self-efficacious, such as complementary and alternative medicine, meditation, and dietary changes, something that upholds prior work indicating that women with ICBPS want nontraditional treatments 6,9 and structured treatment regimens that involve self-care practices. 24 In addition, both Centering and non-Centering participants noted how much isolation and loneliness are felt in the experience of ICBPS. 3,25 Patients have expressed in prior studies that loneliness and isolation are part of ICBPS, and patients with ICBPS want their health care providers to aid them with the psychosocial fallout of ICBPS.…”

Development of a patient‐centered text message‐based platform for the self‐management of interstitial cystitis/bladder pain syndrome symptoms

“…Recently, chronic pain management has shifted from biological “cure” to improving a patient's self‐efficacy that is, extent to which a patient believes they can control their pain and associated symptoms 2,3 . In prior studies, IC/BPS patients expressed strong interest in self‐management and reported using a variety of self‐care practices to manage symptoms 4,5 . Additionally, patients wanted structured treatment programs, improved access to care and support from providers 1,4 …”