Women With IC/BPS Want Doctors Who Offer Education, Choices, and Hope
Kanter G, Volpe KA, Dunivan GC, Cichowski SB, Jeppson PC, Rogers RG, Komesu YM. Important role of physicians in addressing psychological aspects of interstitial cystitis/bladder pain syndrome (IC/BPS): a qualitative analysis. Int Urogynecol J. 2016 Aug 31. [Epub ahead of print]
In this report, the authors provide insights on how debilitating interstitial cystitis/bladder pain syndrome (IC/BPS) can be, and on the key aspects of the doctor-patient relationship that are important to women with the disease. The authors conducted 4 focus groups including a total of 15 women with IC/BPS. Each session was recorded, transcribed, and analyzed by at least 3 physician reviewers. The women were asked about their experience as a patient with IC/BPS symptoms, the medical care they had received for IC/BPS, and any suggestions they had on how their satisfaction with their care could have been improved. On average, the women were about 52 years old and had IC/BPS for approximately 6 years. Using a technique called grounded theory, the researchers were able to identify several key themes that typified the IC/BPS patient experience: the disease is debilitating; the course of the disease is unpredictable, yet unrelenting; and the patients with IC/BPS often feel isolated. Notably, the topic of contemplating suicide came up in each focus group. When asked what they looked for in a doctor, the patients said they would prefer clinicians who provide education on IC/BPS, offer a variety of treatment options and treatment plans, and express hope and optimism regarding the potential outcomes of treatment. Together, these findings emphasize the need for physicians to provide thoughtful care to patients who are suffering from a very debilitating disease. These findings are important because most other IC/BPS studies focus on quantitative data, or information that can be measured and expressed in numbers; by contrast, this study provides qualitative data, or thoughts, feelings, observations, and other information that can be obtained through focus groups, diaries, questionnaires and other means. Qualitative data provides insights into the best care of women IC/BPS that could not be captured by traditional quantitative techniques.