Women's Experience With Severe Overactive Bladder Symptoms and Treatment: Insight Revealed From Patient Focus Groups
ABSTRACT Research has focused on treatment of overactive bladder (OAB) symptoms in women with the goal of cure. The objective of this study was to assess women's perceptions of their OAB symptoms, treatment experience, and outcomes by conducting patient focus groups.
Women seen in our academic center female urology referral clinics were identified by ICD-9 codes for OAB symptoms and recruited to participate in one of five focus groups, totaling 33 patients. Non-clinician moderators conducted the focus group sessions incorporating topics related to patients' perceptions of OAB symptoms, treatments, and outcomes. Data analysis was performed using grounded theory methodology.
Qualitative analysis yielded several preliminary themes: impact of OAB on quality of life, strategies to control wetness, medications and side effects, and triggers. The majority of focus group participants reported only a partial response to medication and other physician-recommended treatments for OAB. Therefore, they developed self-reliant personalized strategies to improve their quality of life. These strategies included fluid restriction, preventive toileting, and, most importantly, the use of incontinence pads.
The majority of the women who participated in the focus groups reported only a partial response to medical and other treatments for OAB. As a result, they developed personalized self-management strategies to improve their quality of life. Although most studies addressing the treatment of OAB aim at curing the condition, such a strategy may be unrealistic. Applying a chronic care model that uses a patient-centered symptom-management approach to OAB may optimize patient outcomes and improve quality of life.
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ABSTRACT: The importance of content validity in developing patient reported outcomes (PRO) instruments is stressed by both the US Food and Drug Administration and the European Medicines Agency. Content validity is the extent to which an instrument measures the important aspects of concepts that developers or users purport it to assess. A PRO instrument measures the concepts most significant and relevant to a patient's condition and its treatment. For PRO instruments, items and domains as reflected in the scores of an instrument should be important to the target population and comprehensive with respect to patient concerns. Documentation of target population input in item generation, as well as evaluation of patient understanding through cognitive interviewing, can provide the evidence for content validity. Developing content for, and assessing respondent understanding of, newly developed PRO instruments for medical product evaluation will be discussed in this two-part ISPOR PRO Good Research Practices Task Force Report. Topics include the methods for generating items, documenting item development, coding of qualitative data from item generation, cognitive interviewing, and tracking item development through the various stages of research and preparing this tracking for submission to regulatory agencies. Part 1 covers elicitation of key concepts using qualitative focus groups and/or interviews to inform content and structure of a new PRO instrument. Part 2 covers the instrument development process, the assessment of patient understanding of the draft instrument using cognitive interviews and steps for instrument revision. The two parts are meant to be read together. They are intended to offer suggestions for good practices in planning, executing, and documenting qualitative studies that are used to support the content validity of PRO instruments to be used in medical product evaluation.Value in Health 12/2011; 14(8):967-77. DOI:10.1016/j.jval.2011.06.014 · 2.89 Impact Factor
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ABSTRACT: To assess the effect of initial visit with a specialist on disease understanding in women with pelvic floor disorders. Women with referrals or chief complaints suggestive of urinary incontinence or pelvic organ prolapse were recruited from an academic urology clinic. The patients completed a Test of Functional Health Literacy in Adults and scripted interview sessions before and after a physician encounter. Physician's treatment plans were standardized based on diagnosis and were explained using models. Interview transcripts were analyzed using qualitative grounded theory methodology. Twenty women with pelvic floor disorders (urinary incontinence or pelvic organ prolapse) were recruited and enrolled in this pilot study. The mean age was 60.5 years (range, 31-87 years) and most of the women were white, with a college degree or beyond. Test of Functional Health Literacy in Adults scores indicated adequate to high levels of health literacy. Preliminary themes before and after the physician encounter were extracted from interviews, and 2 main concepts emerged. First, after the initial physician's visit, knowledge of their diagnosis and the ability to treat their symptoms relieved the patients' concerns related to misunderstandings of the severity of their disease, Second, the patients tended to focus on treatment and had difficulty grasping certain diagnostic terms. This resulted in good understanding of treatment plans despite an inconsistent understanding of diagnosis. Our findings demonstrated a significant effect of the initial physician's visit on the patients' understanding of their pelvic floor disorder. Despite the variation in diagnostic recall after the physician encounter, the patients had a good understanding of treatment plans. This served to increase perceived control and adequately relieve patients' fears.Journal of Pelvic Medicine and Surgery 05/2012; 18(3):137-42. DOI:10.1097/SPV.0b013e318254f09c
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ABSTRACT: Purpose Overactive bladder is subtyped into overactive bladder-wet and overactive bladder-dry, based on the presence or absence, respectively, of urgency incontinence. To better understand patient and physician perspectives on symptoms among women with overactive bladder-wet and overactive bladder-dry, we performed patient focus groups and interviews with experts in urinary incontinence. Materials and Methods Five focus groups totaling 33 patients with overactive bladder symptoms, including 3 groups of overactive bladder-wet and 2 groups of overactive bladder-dry patients, were conducted. Topics addressed patient perceptions of overactive bladder symptoms, treatments and outcomes. A total of 12 expert interviews were then done in which experts were asked to describe their views on overactive bladder-wet and overactive bladder-dry. Focus groups and expert interviews were transcribed verbatim. Qualitative data analysis was performed using grounded theory methodology, as described by Charmaz. Results During the focus groups sessions, women screened as overactive bladder-dry shared the knowledge that they would probably leak if no toilet were available. This knowledge was based on a history of leakage episodes in the past. Those few patients with no history of leakage had a clinical picture more consistent with painful bladder syndrome than overactive bladder. Physician expert interviews revealed the belief that many patients labeled as overactive bladder–dry may actually be mild overactive bladder-wet. Conclusions Qualitative data from focus groups and interviews with experts suggest that a spectrum exists between very mild overactive bladder-wet and severe overactive bladder-wet. Scientific investigations are needed to determine whether urgency without fear of leakage constitutes a unique clinical entity.The Journal of urology 11/2012; 188(5):1811–1815. DOI:10.1016/j.juro.2012.07.044 · 3.75 Impact Factor