Development of the Measure of Adaptations for Pelvic Symptoms (MAPS): The importance of incorporating the female patient's voice

Academic Article

Abstract

  • Women with pelvic floor disorders use many adaptations in an attempt to minimize symptoms and enhance the quality of their lives. Existing condition-specific measures fail to capture the extent or impact of these adaptive behaviors. The present paper seeks to extend the women's health literature and expand the registry of available measures to assess pelvic floor disorders by: 1) documenting the steps taken in the development and initial validation of the Measure of Adaptations for Pelvic Symptoms (MAPS); and 2) describing the added value of incorporating the patient's voice in the instrument development process through in-depth focus groups. The rigorous process used to develop the measure (i.e., literature review, clinical experts, anecdotal patient reports, telephone-administered pilot study, and focus groups with female patients) is described. Analysis of the focus group data yielded eight important adaptation themes used to further refine the MAPS: disclosure, seclusion, being prepared, planning, clothing considerations, sexuality, order and intensity, and outlook. Specifically, focus group participants confirmed the use of sanitary pads and limiting food and beverage consumption. Women did not endorse keeping a jar or commode nearby. Discussions yielded important modifications to items about restroom use, clothing preferences, "survival kits" and "informal" pessary use. Participants described social isolation and preparations for sexual relations that led to new items. This study confirmed the value of incorporating women's voices in the questionnaire development process through in-depth focus groups. The process revealed important patient experiences and led to significant refinements of the final measure. © Springer Science + Business Media BV/The International Society for Quality-of-Life Studies (ISQOLS) 2007.
  • Published In

    Digital Object Identifier (doi)

    Author List

  • Wren PA; Janz NK; Brubaker L; Borello-France D; Bradley CS; Burgio K; Cundiff G; Weber A; Wei J
  • Start Page

  • 239
  • End Page

  • 251
  • Volume

  • 1
  • Issue

  • 3-4