Back to Annual Meeting Page		American Public Health Association 133rd Annual Meeting & Exposition December 10-14, 2005 Philadelphia, PA

Abstract #116999

Patricia A. Wren, PhD, MPH, for the NICHD Pelvic Floor Disorders Network, University of Michigan, 1420 Washington Heights, Ann Arbor, MI 48109-2029, 734-647-3194, pwren@umich.edu

Purpose: Women with pelvic floor dysfunction often engage in adaptive behaviors to minimize their symptom experience. An adaptation index was initially developed by clinical experts and researchers. This study describes the additional benefit of conducting focus groups to capture patient's own experiences. Methods: The NICHD-sponsored Pelvic Floor Disorders Network (PFDN) developed an Adaptation Index with 24-items generated by: (a) literature review; (b) PFDN clinical experts; (c) anecdotal patient reports; and then conducted a pilot study by telephone interview. Subsequently, six focus groups involving 35 women were conducted. Participants engaged in discussions about adaptations and reviewed the measure. Focus group themes using observation notes were generated by three independent research team members. Results: Focus group participants confirmed several major adaptive behaviors including use of sanitary napkins or pads, and limiting food and beverage consumption. The women did not endorse items related to keeping a jar or commode nearby. Discussions yielded important modifications to items about restroom use, clothing preferences, keeping a “survival kit,” and informal pessary use. The focus groups described adaptations involving social isolation and preparations for sexual relations that led to the creation of new items. Conclusion: New measures intended to capture the impact of disease and treatment on a patient's quality of life are often developed primarily by clinical experts or researchers. This study confirmed the value of incorporating women's voices through in-depth focus groups. The process revealed important patient experiences and led to significant refinements of the measure. The revised Adaptation Index will undergo further psychometric evaluation.

Learning Objectives:

• Apply qualitative and quantitative methods to the development of psychosocial measures for use in clinical care and research.
• Characterize the extent to which women with pelvic floor disorders (i.e., pelvic prolapse, urinary incontinence, and fecal incontinence) engage in self-initiated adaptations .
• Describe the significant additions, deletions, and modifications made to the PFDN Adaptations Index as a result of the pilot study and focus groups.

Keywords: Women's Health, Quality of Life

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.